August 2024

• MDF Publishes the 2023 Annual Report to Our Community!
• Click here to read a report out on our first ever Myotonic Dystrophy In Motion Month 2024!
  • Download the new Exercising with Myotonic Dystrophy Infographic!
  • Watch the Myotonic Dystrophy In Motion Month webinars!
    • Come As You Are - Stump the Doctor & Community Panel!
    • Little Things Count - Exercises for Everyday Life
    • The Natural World - The Benefits of Nature & Breathwork
• MDF Returns to Camp JOA! 
• Cheers to Another Great Year at the Andrew Gulch Memorial Golf Outing! 
• Save the Date for the 2025 MDF Annual Conference!
• Ask Your Local Landmarks to Glow Green for International DM Awareness Day!
• High Priority, Short-Term Project Award Recipient: Lukasz Sznajder, PhD, MSc 
• Welcome Scarlett Chidgey, Director of Development! 
• Save the Date for the 2024 MDF Gala in Los Angeles, CA!
• MDF Celebrates Our 2024 Interns!
• PepGen's FREEDOM-DM1 Study Expands to 10 Sites in the US, Canada, & UK!
• Watch the Meet the DM Drug Developer Recordings!
  • Juvena Therapeutics
  • PepGen
  • Dyne Therapeutics
• MDF Facilitates Translation of Steinert's Original Publication on Myotonic Dystrophy! 
• Apply Now - 2025 MDF Research Fellowships & Grants!
• Participants Needed - Research Study on Eating & Swallowing with DM 
• Research Archive: Recent Study on Resistance Training in Women Living with DM! 
• Participants Needed - Join the END-DM1 or ASPIRE-DM1 Studies by the DMCRN! 
• Massachusetts General is Recruiting for a Study on DM1 and the Brain! 

July 2024

• MDF Publishes Heart Guide for People Living with Myotonic Dystrophy!
• Join us for an "Ask the Expert" Webinar on Myotonic Dystrophy & the Heart
• Save the Date for the 2025 MDF Annual Conference!
• July is Myotonic Dystrophy in Motion Awareness Month!
• Alex LeBoeuf Shares Her Workout Routine For In Motion Month!
• Jodie & Luke Bolt Raise DM Awareness & Funds on 208-mile Bike Ride!
• Golf for a Good Cause! Support the Andrew Gulch Memorial Golf Outing!
• MDF Returns to Camp JOA!
• Affected Women - New MDF Support Group!
• Participate in a DM2 Listening Session!
• Ask Your Local Landmarks to Glow Green for International DM Awareness Day!
• Welcome Renee Smith, Fundraising and Operations Coordinator!
• Apply Now - 2025 MDF Research Fellowships & Grants!
• Research Grant Recipient: Kristina Kelly, DPT
• Save the Date for the 2024 MDF Gala in Los Angeles, CA!
• Join us for the Meet the DM Drug Developer Series!
  • July 19th - Juvena Therapeutics
  • August 2nd - PepGen
  • Watch the Recording - Dyne Therapeutics
• Avidity Biosciences Begins Recruiting for Phase 3 HARBOR™ Clinical Trial to Treat Adults Living with DM1!
• Participants Needed - Join the END-DM1 or ASPIRE-DM1 Studies by the Myotonic Dystrophy Clinical Research Network (DMCRN)!
• Participants Needed - Research Study for DM on Eating & Swallowing at Virginia Commonwealth University!
• Massachusetts General Hospital is Recruiting for the study, Cerebrospinal Fluid Biomarkers of Myotonic Dystrophy!
• Your Myotonic Dystrophy Family Registry Participation Makes a Difference!

June 2024

• July is Myotonic Dystrophy in Motion Awareness Month!
• Harmony Biosciences' Phase 2 study Shows Reduction in Sleepiness and Fatigue in Myotonic Dystrophy Type 1! 
• ARTHEx Opens Recruitment for Phase 1-2 Study of ATX-01 in Adults with DM1! 
• Join us for the Meet the DM Drug Developer Series!
  • Jul 12th - Dyne Therapeutics
  • July 19th - Juvena Therapeutics
  • August 2nd - PepGen
• Massachusetts General Hospital is Recruiting for the study, Cerebrospinal Fluid Biomarkers of Myotonic Dystrophy!
• 2024 MDF Regional Conferences Conclude with Inspiring Successes!
  • Click here for photos & a report out from our Los Angeles Conference!
  • Click here for photos & a report out from our Seattle Conference!
• Community Interview: Shaun Moore, Support Group Facilitator!
• Apply Now - 2025 MDF Research Fellowships & Grants!
• Research Fellow Feature: Alexandra L. Marrero Quinones
• Participants Needed - Join the END-DM1 or ASPIRE-DM1 Studies by the Myotonic Dystrophy Clinical Research Network (DMCRN)!
• A new research study for adults living with DM1 is available at Virginia Commonwealth University!
• Participants Needed for Research Study for Women with DM
• Advocacy Update - FY2025 Funding for Myotonic Dystrophy Research
• Golf for a Good Cause! Support the Andrew Gulch Memorial Golf Outing!
• Save the Date for the 2024 MDF Gala in Los Angeles, CA!
• Your Myotonic Dystrophy Family Registry Participation Makes a Difference!

May 2024

• MDF Publishes Mental Health Handbook for People Living with Myotonic Dystrophy
• Avidity Biosciences Announces "Breakthrough Therapy" Designation of del-desiran by US FDA for Adults with DM1!
• Dyne Therapeutics Announces New Clinical Data from ACHIEVE Trial of DYNE-101 in DM1!
• 2024 MDF Regional Conferences Continue to Connect the DM Community!
  • Click here to read more about & view photos from our Houston Conference!
  • There's still time to attend one of MDF's Regional Conferences in 2024!
    • 6/1 - Seattle, Washington
• New Funding Resource for DM Researchers: MDF Pilot Grants Program!
• Research Fellow Feature: Sakura Hamazaki
• Congratulations to MDF Support Group Facilitators for Completing a Rigorous Training!
  • Click here to meet the MDF Support Group Facilitators!
• Welcome Lucie Shiffman, Senior Manager of Community Engagement!
• Summary of a Recent DM Cardiology Study!
• Join us for the Meet the DM Drug Developer Series!
  • Jul 12th - Dyne Therapeutics
  • July 19th - Juvena Therapeutics
  • August 2nd - PepGen
• Participants Needed for Research Study for Women with DM
• Golf for a Good Cause! Support the Andrew Gulch Memorial Golf Outing!
• Order Your Limited-Edition Movement Awareness Month Gear - Available in New Color Combinations!
• “Art Heals All Wounds” Interviews Canadian MDF Support Group Facilitator, Alex LeBoeuf!
• Explore Updates to the Drug Development Pipeline!
• A Star is Born: Zoé Berman’s Stage Show Featured on NBC!
• Save the Date for the 2024 MDF Gala in Los Angeles, CA!
• Your Myotonic Dystrophy Family Registry Participation Makes a Difference!

April 2024

• MDF Sponsors & Presents at 14th International Myotonic Dystrophy Consortium Meeting! (IDMC-14)
• 2024 MDF Regional Conferences Continue to Connect the DM Community!
  • Click here to read more about & view photos from our Boston Conference!
  • Click here to read more about & view photos from our Iowa City Conference!
  • There's still time to attend one of MDF's Regional Conferences in 2024!
    • 5/4 - Houston, Texas
    • 5/18 - Los Angeles, California
    • 6/1 - Seattle, Washington
• Apply Now - 2025 MDF Research Fellowships & Grants!
  • $190k - Early Career Scholars
  • $55k / $105k - MDF Research Fellowship
  • $50k - Pilot Grants
  • $2.5 / $5k - Small Grants
• Early Career Research Grant Feature: Dr. Tahereh Kamali
• Research Fellow Feature: Ms. Betty Bekele
• Thank You Advocates, 11 US Representatives Sign DM Research Letter!
  • Click here to learn more and read the signed letter sent to the House Appropriations Committee!
• Calling All DM Researchers Around the Globe: Apply for Millions of $ in Peer Reviewed Medical Research Program (PRMRP) Grants!
  • Click here to watch our Applying for PRMRP Funding webinar now!
• Golf for a Good Cause! Support the Andrew Gulch Memorial Golf Outing!
• Share Your Input on DM2 Research & Study Design! In partnership with the Wheeler Muscular Dystrophy Research Lab, MDF is collecting information from our community living with myotonic dystrophy type 2 (DM2), and their caregivers, on the perception of brain involvement in DM2.
• Participants Needed for Research Study for Women with DM
• REACH-DM-Kids Survey – A Study Your Child Can Do from Home!
• July is DM In Motion Awareness Month - Order Your Limited-Edition Awareness Month Gear!
• Did you know April is National Volunteer Appreciation Month? Learn more about our incredible team of volunteers and the support groups they lead!
• Read PepGen's First Advocacy Newsletter of 2024!
• Save the Date for the 2024 MDF Gala in Los Angeles, CA!
• Your Myotonic Dystrophy Family Registry Participation Makes a Difference!

March 2024

• The 2024 MDF Regional Conferences are Underway!
  • Click here to read more about & view photos from our first Regional Conference in Gainesville, FL!
  • There's still time to attend one of MDF's Regional Conferences in 2024!
    • 4/6 - Boston, Massachusetts
    • 4/20 - Iowa City, Iowa
    • 5/4 - Houston, Texas
    • 5/18 - Los Angeles, California
    • 6/1 - Seattle, Washington
• Grant Announcement for Researchers: Webinar about Peer Reviewed Medical Research Program (PRMRP) Grants!
• Request for Applications - 2025 MDF Research Fellowships & Grants!
• Apply to Become an MDF Support Group Facilitator Today!
• Watch the Recording of the Meet the DM Drug Developer Session with Avidity Biosciences!
  • Del-desiran, the abbreviated generic name for AOC 1001, shows the reversal of disease progression in people living with DM1 across multiple endpoints, including video hand opening time (vHOT), strength, and activities of daily living when compared to END-DM1 natural history data. Click here to read Avidity Biosciences' Letter to the DM1 Community.
• Did you know March is National Nutrition Month in the US?
  • Click here to view MDF's Nutrition Guide for People Living with Myotonic Dystrophy!
  • Ahora disponible en español - Guía nutricional para personas con distrofia miotónica!
• REACH-DM-Kids Survey – A Study Your Child Can Do from Home!
• Meet the Grant Recipient: Dr. Johanna Hamel
• ARTHEx Biotech Receives IND Clearance from the U.S. FDA to Initiate the Phase I-IIa ArthemiR™ Trial of ATX-01 for DM1
• Register for the Meet the DM Drug Developer with Juvena!
• Gene Editing Technology Shows Promise in Reducing Expansions of Repeats in DM1
• PepGen receives US FDA Fast Track Designation for PGN-EDODM1 for the treatment of Myotonic Dystrophy Type 1
• Register to Attend IDMC-14 Virtually!
• Your Myotonic Dystrophy Family Registry Participation Makes a Difference! 

February 2024

• 57+ Global Alliance Organizations Unite to Raise Awareness on Rare Disease Day 2024!
• Join us for a DM Research Advocacy Webinar on February 29th!
• 2024 Myotonic Dystrophy Drug Development Pipeline Available!
• Did you know February is Heart Health Month?
  • Consensus-based Care Recommendations for Cardiologists Treating Adults with DM1
    • ¡Ahora en Español!
  • Cardiac Considerations for DM2 - 2023 MDF Annual Conference Presentation
• REACH-DM-Kids Survey – A Study Your Child Can Do from Home!
• Register Now for a 2024 MDF Regional Conference in a City Near You! 
  • 3/23 - Gainesville, Florida
  • 4/6 - Boston, Massachusetts
  • 4/20 - Iowa City, Iowa
  • 5/4 - Houston, Texas
  • 5/18 - Los Angeles, California
  • 6/1 - Seattle, Washington
• Apply for a Regional Conference Scholarship!
• Meet the Research Fellow: Cameron Niazi
• Become an MDF Support Group Facilitator!
• JUV-161 Receives FDA Orphan Disease Designation for Treatment of DM1
• PepGen Features MDF Support Group Facilitator in Newsletter!
• Register for IDMC-14!
• Your Myotonic Dystrophy Family Registry Participation Makes a Difference! 

January 2024

• Register Now for a 2024 MDF Regional Conference in a City Near You! 
  • 3/23 - Gainesville, Florida
  • 4/6 - Boston, Massachusetts
  • 4/20 - Iowa City, Iowa
  • 5/4 - Houston, Texas
  • 5/18 - Los Angeles, California
  • 6/1 - Seattle, Washington
• Celebrate Rare Disease Day - Join us for a DM Research Advocacy Webinar!
• Positive Initial Clinical Data from Phase 1/2 ACHIEVE Trial of DYNE-101 in Adults Living with DM 
  • Join us for our first Meet the Drug Developer session of the year with Dyne Therapeutics on January 26th!
• Share Your Input on DM1 Research & Study Design! In partnership with the Wheeler Muscular Dystrophy Research Lab, MDF is collecting information from our community living with myotonic dystrophy type 1 (DM1), and their caregivers, on the perception of brain involvement in DM1.
• New Research Identifies Biological Mechanism of Muscle Dysfunction in Myotonic Dystrophy Mouse Model
• MDF Board of Directors Approves $700,000 in Funding for 2024 Research Grants & Fellowships! 
• Save the Date for the 2024 MDF Gala ! 
• Contribute to DM Research - Take the PSYQ-MD Survey! 
• ¡Ahora en Español- Guía Nutricional y Recomendaciones Clínicas! ! 
  • ¡Guía nutricional para personas con distrofia miotónica!
  • ¡Recomendaciones clínicas para personas con distrofia miotónica en edad fértil!
• IDMC-14 Registration Available Now!
• Keep Your Eyes Open for a Survey to Inform Clinical Care! The Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) is conducting a survey to better understand how certain health issues affect adults living with muscular dystrophy (MD)
• Increase Your Understanding of Myotonic Dystrophy (DM) with the Myotonic Dystrophy Family Registry! 

December 2023

• Give a Gift of Hope & Support MDF for the Holidays! 
• MDF is bringing the Conference to a City Near YOU in 2024! 
• Now Available - DM Research Landscape Assessment!
• Harmony Biosciences Announces Clinically Meaningful Improvements in Excessive Daytime Sleepiness & Fatigue in Adults with DM1 
• PepGen Announces Update on FREEDOM-DM1 Phase 1 Study!
• Leading DM Researcher & Professor, Cynthia Gagnon, PhD, Joins MDF Scientific Advisory Committee! 
• Welcome Andy Rohrwasser, PhD, MBA, as MDF’s Chief Scientific Officer! 
• ¡Ahora disponibles en Español! ¡Guía de ejercicios para personas con distrofia miotónica!
• Early Bird Registration Available Now for IDMC-14! 
• Increase Your Understanding of Myotonic Dystrophy (DM) with the Myotonic Dystrophy Family Registry! 
• Happy Holidays from Team MDF!

November 2023

• Recorded Sessions from the 2023 MDF Annual Conference Now Available Online!
• Start Celebrating the Holiday Season with #GivingTuesday
• Esteemed DM Researcher, Dr. Andy Berglund, Joins MDF Board of Directors & Chairs MDF's Scientific Advisory Committee.
  • Read more about what inspired Dr. Berglund to study DM!
• 2023 MDF Gala Raises $1.1 Million!
• Dyne Therapeutics Provides Update on Significant Progress for ACHIEVE Trial & Upcoming Clinical Milestones
• Avidity Biosciences Shares Clinical Trial Update with DM Community!
• PepGen Announces Update on FREEDOM-DM1 Phase 1 Study!
• Meet Emily Romney, MDF's New Special Projects Manager!
• Meet Genevieve Wiegleb, MDF's New Communications Associate!
• The Next Generation of DM Researchers Meet in New York
• Participating in the Myotonic Dystrophy Family Registry Helps DM Researchers! 
• Mark Your Calendars for IDMC-14! 

September 2023

• MDF Returns to Washington DC for Our Largest Conference Ever!
  • Learn more about the 2023 MDF Annual Conference!
• MDF Advocates Work to Secure Federal Myotonic Dystrophy Research Funding
  • Learn more about our incredible advocates and how you can get involved!
• DM2 Research Participation Opportunity: BraCE-DM2
• Watch the latest recording with AMO Pharma!
• Clearance of Defective Muscle Stem Cells by Senolytics Restores Myogenesis in DM1
• The World Glows Green in Celebration of International Myotonic Dystrophy Awareness Day!
  • Click here to see some of the amazing locations lit up by our Global Alliance. 
  • Learn how you can make a difference - click here to watch a recording on MDF's Advocacy Efforts!
  • What is International Myotonic Dystrophy Awareness Day? Click here to learn more about September 15!
• Download the New Foldable MDF Medical Alert Card!
• NEW: Clinical Recommendations for People of Pregnancy Potential!  
• Apply for 2024 MDF Research Fellowships & Early Career Grants
• Preview Our Fabulous Live Auction at the 2023 MDF Gala! 
• ¡Ahora disponibles en Español!
  • Chequea los documentos disponibles para el cuidado de pacientes con DM. Entre ellos están: la guía de manejo de la anestesia, atención médica de adultos con DM1, DM2 o niños, y así como recomendaciones para cardiólogos y pulmonólogos. ¡Clic aquí para recursos en español!
• Participating in the Myotonic Dystrophy Family Registry Helps DM Researchers! 
• Mark Your Calendars for IDMC-14! 

July 2023

• Download MDF's 2022 Report to the Community!
• Join us for our Meet the DM Drug Developers Webinar Series!
  • August 4th - Avidity Biosciences
  • Watch the latest recording with AMO Pharma!
• Clearance of Defective Muscle Stem Cells by Senolytics Restores Myogenesis in DM1
• Support Team Groovy Garibaldi's English Channel Relay Swim! 
• Download the New Foldable MDF Medical Alert Card!
• Join MDF for a Myotonic Dystrophy Day in Kansas City! 
• Apply for 2024 MDF Research Fellowships & Early Career Grants
• Celebrate International DM Awareness Day - Light Up Your Local Monuments in Green!
• You're Invited to the 2023 MDF Annual Conference!
  • Learn more about the announced speakers and sessions!
• Register for the 2023 MDF Gala!
• Update Your Myotonic Dystrophy Family Registry Profile Today!

June 2023

• Join us for our Meet the DM Drug Developers Webinar Series!
  • June 2nd - ARTHEx Biotech
  • June 9th - Dyne Therapeutics Preclinical Data
• Parent-of-Origin Effect on the Age at Symptom Onset in Myotonic Dystrophy Type 2
• Show You're Part of the Team with Myotonic Dystrophy In Motion Gear!
  • Last day to order is June 30th!
  • Find T-Shirts, water bottles, and more on the MDF Bonfire Store.
  • Join the movement - Myotonic Dystrophy In Motion!
• RNA Society Spotlight: Dr. Andrew Berglund
• Join MDF for a Myotonic Dystrophy Day in Kansas City!
• You're Invited to the 2023 MDF Annual Conference!
  • Early Bird registration extended to June 30th!
  • Discover the Conference Program
  • Calling all DM Professionals - Submit Your Research Poster Abstract!
• Be A Part of DM Research - Take the PSYQ-MD Survey!
• Meet Elias Trevino - Administrative Volunteer
• Mark Your Calendar for the 2023 MDF Gala!
• Get Connected with MDF Support Groups!
  • JOA Caregivers
  • DM2 Caregivers
  • CDM Caregivers
• Request for Applications Open - 2024 MDF Research Fellowships & Early Career Grants!
  • Read the Doctoral & Postdoctoral Fellowship RFA
  • Read the Early Career Research Grant RFA
• Meet Mindy Kim - Community Outreach Specialist
• Update Your Myotonic Dystrophy Family Registry Profile Today!
• My Featured Content:
  • Volunteer & Career Opportunities

May 2023

• Join us for our Meet the DM Drug Developers Webinar Series!

  • June 2nd - ARTHEx Biotech
  • June 9th - Dyne Therapeutics Preclinical Data
  • July 7th - AMO Pharma
  • Aug 4th - Avidity Biosciences

  Watch our most recent recordings:

  • PepGen
  • Avidity Biosciences Topline Data
• Download the Myotonic Dystrophy Anesthesia Guidelines - Ahora en Español!
  • Download the English one-page Quick Reference Guide./a>
  • Haga clic aquí para descargar las Pautas para la anestesia en Español.
• DMPK-promoter Silencing by CRISPRi a Promising Therapeutic Approach for DM1.
• Join MDF for a Myotonic Dystrophy Day in Kansas City!
• Show You're Part of the Team with Myotonic Dystrophy In Motion Gear!
  • Last day to order is June 16th!
  • Find T-Shirts, water bottles, and more on the MDF Bonfire Store.
  • Join the movement - Myotonic Dystrophy In Motion!
• Structure-forming CAG/CTG repeats interfere with gap repair to cause repeat expansions and chromosome breaks.
• You're Invited to the 2023 MDF Annual Conference!
  • Early Bird registration for the 2023 MDF Annual Conference ends June 19th!
  • Looking for Childcare at the 2023 MDF Annual Conference?
  • Calling all DM Professionals - Submit Your Research Poster Abstract!
• DM Research Grant Feature - Melissa Hale, PhD
• DM Research Fellow Feature - Jiss Louis, PhD
• Mark Your Calendar for the 2023 MDF Gala!
• Get Connected with MDF Support Groups!
  • JOA Caregivers
  • DM2 Caregivers
  • CDM Caregivers
• Thank You Jennifer Kang! 2022-2023 MDF Intern
  • Find a Doctor Map
• Request for Applications Open - 2024 MDF Research Fellowships & Early Career Grants!
  • Read the Doctoral & Postdoctoral Fellowship RFA
  • Read the Early Career Research Grant RFA
• Update Your Myotonic Dystrophy Family Registry Profile Today!
• My Featured Content:
  • Volunteer & Career Opportunities

April 2023

• Request for Applications Open - 2024 MDF Research Fellowships & Early Career Grants!
  • Read the Doctoral & Postdoctoral Fellowship RFA
  • Read the Early Career Research Grant RFA
• Join us for our Meet the DM Drug Developers Webinar Series!
  • April 7th - Dyne Therapeutics
  • May 5th - PepGen
  • June 2nd - ARTHEx Biotech
  • July 7th - AMO Pharma
  • Aug 4th - Avidity Biosciences
• Guide DM1 & DM2 Drug Development - Take the ENSA Survey!
  • ¿Prefiere español? ¡Pulse aquí si está interesado en participar!
• MGH Uses Targeted Drug to Restore Muscle Strength and Correct Myotonia in Mice with DM1
  • Read the Open Access article on Nature.com.
• Investigating the safety of baliforsen (ISIS 598769), an ASO targeting DMPK mRNA.
• You're Invited to the 2023 MDF Annual Conference!
  • Register Now for the 2023 MDF Annual Conference
  • New this year! Be the bridge between the DM Community and Research Professionals!
• Join Us Each Day Next Week During MDF Advocacy Week
• DM Research Grant Feature - Matteo Garibaldi, MD, PhD
• DM Research Grant Feature - Dylan Farnsworth, PhD
• Save the Date for IDMC-14
• Be a Part of the Myotonic Dystrophy Family Registry’s 10th Anniversary Celebration!
• Applications for Summer Internships at MDF Open Now!
• MDF Continues Search for Chief Science Officer!
• My Featured Content:
  • Download the Myotonic Dystrophy Anesthesia Guidelines
  • Volunteer & Career Opportunities

March 2023

• Global Alliance of 57+ Myotonic Dystrophy Focused Organizations Unite to Raise Awareness on Rare Disease Day 2023
• Join us for our Meet the DM Drug Developers Webinar Series!
  • April 7th - Dyne Therapeutics
  • May 5th - PepGen
  • June 2nd - ARTHEx Biotech
  • July 7th - AMO Pharma
  • Aug 4th - Avidity Biosciences
• Be A Part of DM Research - Take the PSYQ-MD Survey!
• Join Us for MDF's Advocacy Week
• DM Research Fellow Feature - Tatiana Koike, PhD
• DM Research Fellow Feature - Emma Shea
• #RAREis College Scholarship Fund by the Everylife Foundation
  • Did you know MDF Community Member Nick Gulch received a 2022 #RAREis Scholarship Award
• Access Our Video Catalog on the MDF Digital Academy!
  • Are you a DM Researcher looking for more funding? Watch Applying for PRMRP Funding!
  • Learn how to engage your representatives with support from MDF with our Advocacy Workshop.
• Does Your Doctor Understand Myotonic Dystrophy?
  • Fill your care team with myotonic dystrophy experts
  • Help improve our Find a Doctor Map
• Have You Joined the Myotonic Dystrophy Family Registry?
• MDF Continues Search for Chief Science Officer!
• Applications for Summer Internships at MDF Open Now!
• My Featured Content:
  • Download the Myotonic Dystrophy Anesthesia Guidelines
  • Volunteer & Career Opportunities

February 2023

• February is Rare Disease Month!
  • Applying for Myotonic Dystrophy Research Funding: Peer Reviewed Medical Research Program (PRMRP)
  • Learn how to engage your representatives with support from MDF at our Advocacy Workshop
  • Celebrate the Rare Disease Community and use your voice to make a difference on February 28th!
• Save the Date for the 2023 MDF Annual Conference!
  • Join us September 7th, 8th, & 9th in Washington, DC
  • Check our highlight video from the 2022 MDF Annual Conference
• Welcome Mindy Buchanan, Director of Programs
• Does Your Doctor Understand Myotonic Dystrophy?
  • Fill your care team with myotonic dystrophy experts
  • Help improve our Find a Doctor Map
• DM Research Fellow Feature - Mackenzie Davenport, PhD
• DM Research Fellow Feature - Julie Fortin, PhD
• Community Interview: Julie & Alex, MDF's Support Group Facilitators for Canada
• Community Interview: Araceli Mera & David Kugler, MDF’s Spanish-language Support Group Facilitators
• Have You Joined the Myotonic Dystrophy Family Registry?
• MDF Announces Search for Chief Science Officer
• My Featured Content: MDF is recruiting volunteer leaders and employees!

January 2023

• In Remembrance of Dad: 王望塵 - Reynold Wantseng Wang
• Congress Ensures DM Remains Eligible For PRMRP Research Funding For Sixth Year in A Row
  • DM Researchers Awarded Record $8.8 Million in New Awards In Fiscal Year 2022
  • Use Your Voice to Make a Difference! Join MDF for our Rare Disease Month Advocacy Workshop
• Welcome Sofia Olmos, PhD, Myotonic Dystrophy Family Registry Coordinator
  • Join the Myotonic Dystrophy Family Registry (MDFR)
• New Sites Recruiting for Harmony Biosciences DM1 Trial
  • Sites are now recruting in over 14 states in the US and Canada!
  • Find DM research participation opportunities on the MDF Study & Trial Resource Center
• Be a Part of the END-DM1 Study
• Community Interview: Glenda Winson, Guillermo Zubillaga & Jan Jaffe, New York City MDF Support Group Facilitators
• Community Interview: Jodie Howell & Samantha Welsh, Virginia State MDF Support Group Facilitators
• My Featured Content:
  • Volunteer & Career Opportunities with MDF
  • Join the Movement: International Myotonic Dystrophy Awareness Day

December 2022

• MDF Board of Directors Approves Over $1 Million in Funding for 2023 Research Grants & Fellowships
• Avidity Biosciences Announces Data Demonstrating First-Ever Successful Targeted Delivery of RNA to Muscle
  • Read Avidity's Open Letter to the DM Community.
  • Watch the recording of Meet the DM Drug Developers with Avidity Biosciences.
• Community Interview: Peter Ingraham
• Community Interview: Sarah Berman
• Clinical and Molecular Insights into Gastrointestinal Dysfunction in Myotonic Dystrophy Types 1 & 2
• ¡Nuevo documento! El Planificador de Visita Médica
  • Download the Clinic Visit Planner in English!
• Participate in DM Research - Join the Myotonic Dystrophy Family Registry!
  • Learn more about ongoing research at the MDF Study & Trial Resource Center.
  • Join the Myotonic Dystrophy Family Registry or update your listing today!
• All 2022 MDF Annual Conference Photos Available Now!
  • Learn more about the 2022 MDF Annual Conference.
• Join the Global Alliance for Myotonic Dystrophy Awareness!
  • Learn more about International Myotonic Dystrophy Awareness Day.
• Support MDF for the Holidays!
  • Thank You for Considering MDF in Your Year End Gift Giving
  • Support MDF with your Holiday Shopping on Amazon Smile!
• Jennifer Kang Joins MDF as Public Health Intern
  • Learn more about the team at MDF!
• My Featured Content: Volunteer & Career Opportunities with MDF!

November 2022

• MDF Gala Breaks Fundraising Record!
• MDF Shares 2021 Annual Report
• US Government Recognizes International Myotonic Dystrophy Awareness Day
  Thank you for your support to make this public recognition of the DM Community possible:
  • Sen. Tim Kaine
  • Sen. Cynthia Lummis
  • Sen. Amy Klobuchar
  • Sen. Tina Smith
    • Don't miss this special video message from Senator Amy Klobuchar!
    • Learn about how you can help advance these Shared Areas of Focus!
• Meet Ruth Sheldon, MDF's Health Resources Coordinator
• 2022 MDF Annual Conference Session Recordings Available Now
• Myotonic Dystrophy: GABA Receptors Implicated in Sleepiness, via Mouse Model
• Ophthalmologists Can Play a Crucial Role in the Early Diagnosis of DM1
• Get Connected with MDF Support Groups:
  • New Spanish Speaking Group
  • New Virginia State Group
  • Find all upcoming events on the MDF Calendar
  • Learn more about our Support Group program
• Medicare Open Enrollment - Now Until December 7:
  • Visit the official Medicare.gov Website
  • Download MDF's Health Insurance Considerations for People Living with Myotonic Dystrophy in the United States.
• Rock Your Myotonic Dystrophy Awareness Gear!
• Are You Ready for the Giving Season?
  • Start your own #GivingTuesday fundraiser on Facebook!
  • Support MDF with your Holiday Shopping on Amazon Smile!
• My Featured Content: Volunteer & Career Opportunities with MDF!

September 2022

• Support Community, Care, and a Cure at the 2022 MDF Gala!
  • Come be a part of MDF's largest fundraising event of the year on October 20th!
  • Book Your Stay in the MDF Room Blocks!
  • Preview the Fabulous Live Auction Packages at the 2022 MDF Gala!
  • Show your support even if you can’t attend!
• DM Community Reunites at the 2022 MDF Annual Conference
• Industry Updates Available - More Session Recordings Coming Soon!
  • Watch Industry Updates - Part 1.
  • Watch Industry Updates - Part 2.
• The World Recognizes Myotonic Dystrophy on Sept 15!
  • Learn about how you can help advance our Shared Areas of Focus!
  • Use your voice to improve the future of DM care & research!
  • Explore International Myotonic Dystrophy Awareness Day Activity on Social Media:
    • Facebook
    • Instagram
    • Twitter
    • LinkedIn
• Opportunity for Adults with DM2 to Participate in a Research Study!
  • Researchers at Wake Forest University are interested in learning how the brain is impacted by myotonic dystrophy type 2 (DM2).
  • Visit the MDF Study & Trial Resource Center for more opportunities to participate.
• Show You're Part of the Team - Order Your Myotonic Dystrophy In Motion Gear Today
  • To receive your gear in time for the holidays, order before October 23rd!
  • Need assistance with international shipping? Email Steve Bolt for more information.
  • What is Myotonic Dystrophy In Motion?
• Data Supports the Potential of PepGen’s Enhanced Delivery Oligonucleotide (EDO)
• Apply for MDF Fall & Winter Internships!
• My Featured Content: Volunteer & Career Opportunities with MDF!

August 2022

• Join the 2022 MDF Annual Conference Online!
• Apply for a 2023 MDF Research Fellowship or Grant!
  • Research Fellowships - Sept. 9th
  • Early Career Research Grant - Sept. 9th
• Ask-the-Expert: Disability Rights, Future Planning & Special Needs Trusts
• Celebrate International Myotonic Dystrophy Awareness Day!
• Harmony Biosciences Updates 10 Sites in DM1 Study
  • Five additional sites are now recruiting! Five new sites added across the US and Canada.
  • Watch their their 2022 MDF the DM Drug Developer Webinar!
• Avidity Bioscienes Enrolls Patients in the Marina^TM Open Label Extension Study
  • Read the full MARINA-OLETM announcement.
  • Watch their their 2022 MDF the DM Drug Developer Webinar!
• MDF Community Member Nick Gulch Receives #RAREis Scholarship Award
• Community Interview: Kristen McClintock
• Save the Date for the 2022 MDF Gala in NYC!
• My Featured Content:
  • Look good, feel good! Rock your myotonic dystrophy awareness gear!
  • Volunteer & Career Opportunities with MDF!

July 2022

• 2022 MDF Annual Conference:
  • Registration is Open!
  • Free childcare at the MDF Annual Conference
  • Discounted Scooter & Wheelchair Rental
• Apply for a 2023 MDF Research Fellowship or Grant:
  • Research Fellowships - Sept. 9th
  • Early Career Research Grant - Sept. 9th
• In Case You Missed It! Discover the DM Research Map
• Welcome MDF's Newest Board Member, Haley Martinelli, Esq.!
• Summer Interns at MDF
• Celebrate International Myotonic Dystrophy Family Day on July 23rd
• Meet the DM Drug Developers:
  • Harmony Biosciences! - July 22nd
  • PepGen! - August 5th
    • Apply to join PepGen's Community Advisory Board
• Ask-the-Expert: Disability Rights, Future Planning & Special Needs Trusts - Aug19th
• Bolt Family Raises DM Awareness in Annual Seattle to Portland Ride!
• A Support Group for Defying the Odds: DM1 Over 50
• COVID-19 & Muscular Dystrophy Article Published in the Journal of Neuromuscular Diseases
• DM Publication Makes Cover of Science Translational Medicine
• Dyne Therapeutics Announces Clearance of Clinical Trial Application for DYNE-101 for the Treatment of DM1
• Openings for PhD Graduates, Postdocs, & Scientists with Experience with DM
• My Featured Content:
  • International Myotonic Dystrophy Awareness Day (Sept. 15th!) is right around the corner, will you be wearing green?
  • Volunteer & Career Opportunities with MDF!

June 2022

• 2022 MDF Annual Conference:
  • Register now to join us in San Diego on Sept. 9-10!
  • Discounted Scooter & Wheelchair Rental!
  • Submit a Research Poster Abrstract by July 1st
• Anesthesia Guidelines Now Available in German
• Discover the DM Research Map!
• Welcome Mounica Lakshmi Dugginapeddi, MPH Community Programs Coordinator!
• DM Research Fellow Feature - Christina Heil, PhD
• DM Research Fellow Feature - Research Fellow Feature: Preeti Kumari, PhD
• Community Interview: Cindy Hubert
• Ask-the-Expert: DM & Palliative Care - July 15th
• Meet the DM Drug Developers
  • Avidity Biosciences! - July 1st
  • Harmony Biosciences! - July 22nd
• Celebrate Families Day at IDMC-13
• Watch the Recording! Ask-the-Expert: A Community Portrait through Surveys and Insurance Claims Data
• My Featured Content:
  • Look good, feel good! Rock Your Myotonic Dystrophy Awareness Gear!
  • Volunteer & Career Opportunities with MDF!

May 2022

• 2022 MDF Annual Conference:
  • Early bird registration ends soon, so register now to join us in San Diego on Sept. 9-10!
  • Apply for a Scholarship:
    • MDF Scholarships - Due May 26th
    • JOA Ambassadors Scholarships - Due July 18th
  • Submit a Research Poster Abrstract by July 1st
• Myotonic Dystrophy In Motion
  • Pre-order a Myotonic Dystrophy In Motion Bike Jersey!
• Brito Family Celebrates World Bonsai Day with MDF
• MDF Advocates Unite to Increase DM Research Funding
  • Register for our Fall Advocacy Update & Training on Sept. 15th
• Requests for 2023 Research Fellowships & Grant Applications
  • Research Fellowships - Sept. 9th
  • Early Career Research Grant - Sept. 9th
• Community Interview: Sammy Ochoa
• Register for Our Upcoming Webinars:
  • Meet the DM Drug Developers with ARTHEx biotech - June 3rd
  • Ask-the-Expert: A Community Portrait through Surveys and Insurance Claims Data - June 17th
  • Watch all our recorded sessions on the MDF Digital Academy
• Healthy Living Discussion Group - Creating a Movement Practice - June 14
  • May Movement Challenge Returns!
  • Find more ways to connect!
• Celebrate Families Day at IDMC-13
• My Featured Content:
  • Look good, feel good! Rock Your Myotonic Dystrophy Awareness Gear!
  • Volunteer & Career Opportunities with MDF!

April 2022

• Early Registration for the MDF Annual Conference Opens April 25th!
• Ask-the-Expert: Key Neuropsychological Features of DM1
  • Find all our upcoming Ask-the-Expert sessions.
• Belen Esparis, MD, Elected to MDF Board of Directors
• Learn How You Can Advocate for Federal Myotonic Dystrophy Funding
  • Register for our Advocacy Training on April 21st
• MDF Welcomes Volunteer Writers Barbara & Samantha Ochoa
• Register for Meet the DM Drug Developers: Avidity Biosciences on July 1st
  Avidity Biosciences Announces Summer Internship Program:
  • Biology.
  • Human Resources.
  • Health Economics & Outcomes Research.
  • Project Management.
  • Medical Affairs.
• Join us on Oct. 20th, for the 2022 MDF Gala!
• DM Research Fellow Feature - Avery Engelbrecht
• DM Research Fellow Feature - Xiaomeng "Belle" Xing
• Celebrate Families Day at IDMC-13
• In Memory of Gilbert Gottfried
• #RAREis College Scholarship Fund by the Everylife Foundation
• MDF Board of Directors Approves 2021-2024 Strategic Plan
• My Featured Content:
  • Look good, feel good! Rock Your Myotonic Dystrophy Awareness Gear!
  • Volunteer & Career Opportunities with MDF!

March 2022

• Save-the-Date for the MDF Annual Conference - Sept. 9th & 10th
• Register for Ask-the-Expert: DM2 & Managing Pain on March 18th
  • Find all our upcoming Ask-the-Expert sessions.
• MDF & Marigold Foundation Report on DM & Insurance:
  • Access "Healthcare resource utilization, total costs, and comorbidities among patients with myotonic dystrophy using U.S. insurance claims data from 2012 to 2019"
  • Register for Ask-the-Expert: What is the Cost of DM?
• Register for Meet the DM Drug Developers: Dyne Therapeutics on April 1st
  • Find all our upcoming Meet the DM Drug Developer sessions.
• MDF Launches National Advocacy Committee (NAC)
• MDF Gathers Parents & Guardians of Children Living with DM
• Healthier Living Discussion Group Continues to Grow!
• DM Research Fellow Feature - Lily Cisco
• DM Research Fellow Feature - Jesus Frias
• Volunteer & Career Opportunities with MDF!
• My Featured Content: Look good, feel good! Rock Your Myotonic Dystrophy Awareness Gear!

February 2022

• Berglund Lab Builds Community
• Ask-the-Expert Returns
  • Register for DM & Intimacy on Feb. 18th
  • Find all our upcoming sessions.
• Rare Disease Day (RDD)
  • Advocate for Myotonic Dystrophy on Rare Disease Day!
  • Find global RDD Events.
• Participate in DM Research Today!
  • Study & Trial Resource Center
  • Join the Myotonic Dystrophy Family Registry (MDFR)!
  • The Myotonic Dystrophy Clinical Research Network (DMCRN) is recruiting for END-DM1!
• The Jackson Laboratory Releases e-Book on Rare Disease Odyssey
  • Download the e-book on JAX’s website.
  • Read more about JAX's commitment to the DM Community.
  • Learn more about International Myotonic Dystrophy Awareness Day.
• Are You Interested in MDF Clothing & Activewear?
• Download the Myotonic Dystrophy Anesthesia Guidelines!
• Research Fellow Feature - Larissa Nitschke, PhD
• Research Fellow Feature: Zoe Scherzer
• Join the MDF Caregivers Facebook Group!
• Volunteer with MDF!
• We're Hiring!
  • Salesforce Developer or Agency
  • Administrative & Operations Manager
  • College Interns
  • Website Developer
• My Featured Content:
  • Mark your Calendar for MDF's Major Events in 2022!
  • Look good, feel good! Rock Your Myotonic Dystrophy Awareness Gear!

January 2022

• Mark your Calendar for MDF's Major Events in 2022!
• 4 New Members Join MDF's Scientific Advisory Committee!
• You're Invited to our Virtual Community Meetings!
  • Virginia - Jan 30
  • Washington, DC - Feb 13
  • Texas - Feb 13
  • Iowa - Feb 27
  • Northern California - Feb 27
  • New York - Mar 13
  • Pennsylvania - Mar 27
  • Maryland - Apr 24
  • Missouri - May 15
• MDF Reviews 2022 DM Research Fellowship Applications
• Virtual Learning Continues in 2022, Starting with Intimacy in February!
  Ask-the-Expert
  • Intimacy - Feb 18
  • DM2 & Managing Pain - Mar 18
  • To Be Announced - Apr 15
  • DM & Primary Care - May 20
  • DM & Mental Health - Jun 17
  • DM & Palliative Care - Jul 15
  • Disability Rights, Future Planning & Special Needs Trusts - Aug 19

  Meet the DM Drug Developer Dates to Be Announced!

• MDF is a Proud Sponsor of IDMC-13!
• Did You Know MDF has a Monthly DM2 Support Group?
• Healthier Living Discussion Group Off to a Strong Start
• Watch the COVID-19 & Vaccines Ask-the-Expert Webinar
• Share Your Stories to Help Improve DM Care!
• We're Hiring!
  • Events Contractor
  • Salesforce Developer or Agency
  • Administrative & Operations Manager
  • College Interns
  • Website Developer
• My Featured Content:
  • Join the Myotonic Dystrophy Family Registry (MDFR) Now!
  • Look good, feel good! Rock Your Myotonic Dystrophy Awareness Gear!

December 2021

• Celebrating the Life of Hunter Lord
• Consider MDF in Your Year End Gift Giving!
• Participate in Research: DM1 Adults without Muscle Symptoms
• Thank You Senators Cynthia Lummis, Susan Collins, Tina Smith for Cosponsoring S.Res.336!
• MDF Launches Healthier Living Discussion Group
• Enjoy Nutritious & Dysphagia Friendly Food for Your Holiday Feasts!
  • Find new recipes in MDF Cooks!
  • Need a nutrition boost or tips on dealing with digestive issues? Read the Nutrition Guide for Individuals with Myotonic Dystrophy!
• Get a Head Start on Your New Year's Resolution to Exercise!
  • Watch MDF's recorded exercise & movement sessions.
  • Read the Exercise Guide for Individuals with Myotonic Dystrophy.
  • Share a copy of the Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy with your Doctor and Physical Therapist.
• MDF's Webinar Series Return in February 2022!
  • Ask-the-Expert
  • Meet the DM Drug Developers
  • Find all our webinar recordings and more on the MDF Digital Academy.
• The Holidays are a Great Time to Connect with MDF Support!
  • Find all upcoming group meetings on the MDF Calendar
  • Find out more about MDF Support groups
• End the Year Dancing with MDF's Community Playlist!
• We're Hiring!
  • Administrative & Operations Manager
  • College Interns
  • Website Developer
• My Featured Content:
  • Support MDF with your Holiday Shopping on Amazon Smile!

November 2021

• Ask-the-Expert: COVID-19 & Vaccines
• The 2021 Virtual Gala was a Spectacular Success!
• Avidity Biosciences Delivers First Doses in Clinical Trial for Adults Living with DM1!
• Dyne Releases New Data from their DM1 Clinical Development Program
  • Read a summary of Dyne's data.
  • Learn more about Dyne Therapeutics on the MDF Digital Academy.
• Medicare Open Enrollment - Now Until December 7th!
  • Visit the official Medicare.gov Website to learn more.
  • Download MDF's Health Insurance Considerations for People Living with Myotonic Dystrophy in the United States.
• Virtual Support Group for Adults Over 50 Living with DM1 Plan Future Meetings!
• Have Your Doctors Read the DM Anesthesia Guidelines? or Quick Reference Guide?
• Help Improve DM Care by Sharing Your Story with MyPaTH Story Booth! ​
• Save the Date for the 2022 MDF Annual Conference!
• We're Hiring! Development Manager
• My Featured Content:
  • Support MDF for #GivingTuesday on Nov 30th!
  • Support MDF with your Holiday Shopping on Amazon Smile!

October 2021

• Join us at the MDF 2021 Virtual Gala!
• Surprise Auction Item Announced: Luxury Villa in Ibiza, Spain!
• NEW - DM1 Over 50 Virtual Support Group
• Conference Session Recordings Now Available!
• Share Your Stories to Help Improve DM Care! MDF is partnering with MyPaTH Story Booth and we invite you to join us! 
  DM Audio Stories are already being published!
  • After eight years of managing undiagnosed symptoms, this storyteller shares their health care experiences after being diagnosed with a rare genetic disorder; Myotonic Dystrophy Type 1.
  • This storyteller shares the joys and challenges of being a parent to a child with congenital myotonic dystrophy; the work of being a parent advocate and the honor of loving a child.
• Enjoy our International DM Awareness Day Program On-Demand!
• SSA Continues to Operate During the COVID-19 Pandemic
• We're Hiring! Development Manager
• My Featured Content: Check out MDF's Study & Trial Resource Center!

September 2021

• Celebrate International DM Awareness Day with MDF!
• Call On Your Senator to Co-Sponsor Senate Resolution 336!
• Rock Your Myotonic Dystrophy Awareness Gear!
• Spread the Word on Social Media!
  • Download the Logo Pack!
  • Get the Social Media Kit!
  • DM Quick Reference Facts!
• Show Your Support with a Window Sign!
  • Download and print your Window Sign!
  • Customize and share your "Dear Neighbor" Letter.
• Share DM Resources with Your Healthcare Providers!
• Represent an Organization? Join the Global Alliance for DM Awareness!
• Thank You for Changing the Future of Myotonic Dystrophy!
• My Featured Content: Host a Virtual Fundraiser in honor of September 15th!

August 2021

• Start Planning Your Day with the Conference Agenda
• First Conference? Attend a First Timers' Tea!
• The DM Professional Track Returns
• Get Technical Assistance Ahead of the Conference
• Attend Your Favorite Annual Conference Sessions
• Register Now for the 2021 Virtual MDF Annual Conference!
• Get Ready for International DM Awareness Day!
  • Learn how you can organize local events and raise myotonic dystrophy awareness!
  • Get the facts about DM!
  • Get your DM Awareness T-Shirts while they're hot!
  • Represent an organization? Join the Global Alliance!
• Special thanks to our Platinum Sponsor, Avidity Biosciences, and our Gold Sponsors, Harmony Biosciences and Dyne Therapeutics for helping make this event possible.
• My Featured Content: Refresh your DM Knowlege with last years Recorded Conference Sessions!

July 2021

• 2021 Virtual MDF Annual Conference, September 10-11
  • Register now!
  • Research poster abstracts due by July 30th.
  • Special thanks to our Platinum Sponsor, Avidity Biosciences, and our Gold Sponsors, Harmony Biosciences and Dyne Therapeutics for helping make this event possible.
• Ask-the-Experts about DM and the Brain!
• Harmony Biosciences Launches Phase 2 DM1 Clinical Trial!
  • View their phase 2 infographic for a quick overview on the study and trial sites.
  • Get all the details from Harmony Biosciences recent Meet the DM Drug Developers session.
• Canadian Electronic Health Record System Gets New DM Functionality!
• Meet Avidity Biosciences on August 6th!
• Participants Needed for END-DM1 Study!
• Get Ready for International DM Awareness Day
  • Celebrate Family Day with MDF on July 24th!
  • Find new ways to show your support for International DM Awareness Day!
  • Get the facts about DM!
  • Get your DM Awareness T-Shirts while they're hot!
  • Represent an organization? Join the Global Alliance!
• 2022 MDF Research Fellowship Applications are Now Open!
• My Featured Content:
  • Support MDF with your Summer Shopping with AmazonSmile
  • Review MDF's Anesthesia Quick Reference Guide for DM and our Full Myotonic Dystrophy Anesthsia Guidelines.

June 2021

• 2021 Virtual MDF Annual Conference, September 10-11
  • Register now!
  • Research poster abstracts due by July 30th.
• 2022 MDF Research Fellowship Applications are due by September 10th.
• Ask-the-Experts about Speech, Language, & Swallowing with DM this Friday, June 18th!
• Alexandra LeBoeuf Wins International Myotonic Dystrophy Awareness Day Logo Contest!
  • Learn more about Alexandra, her family, and the inspiration behind her logo.
  • Get involved! Learn about the new programs and resources available.
  • Represent an organization? Join the Global Alliance!
• Meet Harmony Biosciences on July 2nd!
• Participate in a DM1 Research Study!
• Attend a Virtual DM Support Group!
• MDF is Growing: Development Manager
• My Featured Content: Share Resources with your Doctor.

May 2021

• Conference Registration is Now Open!
• Dr. Richard Moxley, Emeritus Member of the MDF Scientific Advisory Committee
• Ask-the-Experts about DM and the Heart on Friday, May 21st!
• Research Fellow Feature: Maya Gosztyla
• Friday, June 4th – Meet Lupin Neurosciences
• Friday, June 9th – Meet ARTHEx Biotech
• Vote on the Logo for International Myotonic Dystrophy Awareness Day!
  • Click here to cast your vote by May 25th!
  • Read the joint press release!
• Welcome Kate Beck, Special Projects Manager
• Building on Our Rare Disease Day Success - Advocating for Increased DM Research
• 2022 MDF Research Fellowship Applications are Now Open!
• Participate in a DM1 Interview Study
• MDF is Growing: Development Manager
• My Featured Content:
  • Check out MDF's Study & Trial Resource Center!
  • Visit the MDF Digital Academy!

April 2021

• Spring Update from MDF’s CEO!
• Tomorrow, 4/16: Ask-the-Experts about the Gastrointestinal (GI) Tract and DM!
• Research Fellow Feature: Kamyra Simone Edokpolor
• Friday, May 7th – Meet Biogen and Ionis Pharmaceuticals
• Friday, April 2nd – Meet Expansion Therapeutics
• Celebrate International Myotonic Dystrophy Awareness Day!
  1. Calling all artists: Last Chance to Submit Your Logo!!
  2. Read the joint press release!
• Review Paper: Myotonic dystrophy type 1 drug development
  1. Read the open access article with thanks to the Marigold Foundation
  2. On June 9th, join Dr. Ruben Artero for a bonus Meet the DM Drug Developer session with ARTHEx Biotech
• Get Active with the May Movement Challenge
• My Featured Content: Visit the MDF Study & Trial Resource Center!

March 2021

• Share Your Thoughts on MDF!
• Tomorrow, 3/19: Ask-the-Experts About Your Lungs and DM!
• Last Chance for Online Research Participation Opportunity: COVID-19 Survey
• Thank You Clare May!
• Research Fellow Feature: Benjamin M. Kidd
• Friday, April 2nd – Meet Expansion Therapeutics
• Celebrate International Myotonic Dystrophy Awareness Day!
  1. Read the joint press release!
  2. Calling all artists: Submit your logo design to help signify the day!
  3. Join the Movement!
• Participate in a DM Drug Development Survey
• My Featured Content: Join Northern California Support Group Facilitator, Dr. Leslie Krongold, at the Abilities Virtual Experience!

February 2021

• In Memory of Sir Peter Harper
• DM1 Prevalence Study Published and Available
• This Friday: Your Chance to Ask the Exercise Experts Anything!
• 2 Online Research Participation Opportunities: COVID-19 Surveys
  1. The University of Iowa Survey
  2. The University of Rochester Survey
• Celebrate Rare Disease Day 2021!
  1. Be an MDF Advocate for Rare Disease Day!
  2. How well do you know MDF?
  3. Looking for other RDD Events?
• Caregiver Virtual Support Group Meeting
• MDF 2020 Volunteer of the Year: Mollie Allred!
• Research Fellow Feature: Rong-Chi Hu
• Friday, March 5th – Meet the AMO Pharma Team
• Harmony Biosciences Seeks Volunteers for Advisory Board
• Join MDF's Strategic Planning Efforts!
• My Featured Content: Myotonic Dystrophy Foundation announces the search for a new Development Manager

January 2021

• Register for the Meet the DM Drug Developers Series
• Ask-the-Expert Series Open for Registration
• Be a Myotonic Dystrophy Research Advocate During Rare Disease Month
• Fellow Feature: Dr. Subodh Mishra
• MDF 2020 Above & Beyond Award: Angie Wiggans!
• COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community
• MDF Enters Strategic Planning
• IDMC-13 Postponed to 2022
• My Featured Content: MDF is looking for a DM2 Caregiver Support Group Facilitator!

December 2020

• Year End Message from Our CEO
• Tom McPeek Joins MDF Board of Directors
• COVID-19 Vaccines and the DM Community
• Genetic Treatment Plus Exercise Reverses Fatigue in Mice with Muscle Wasting Disease
• Help our DM Community Find a DM Expert
• MDF Announces 5 New Research Fellowships
• New in 2021: Meet the DM Drug Developer Series
• DM Strength Training with Rachel Kahn: Recordings Available!
• DM Toolkits & Resources
• Join the Myotonic Dystrophy Family Registry!
• MDF is Hiring!
• My Featured Content: Help us close out a truly unprecedented year as we look toward the future of MDF!

November 2020

• The 2020 Virtual Gala was a Massive Success!
• Back by Popular Demand! Strength Training Series with Rachel Kahn
• Supporting Myotonic Dystrophy through Biobank Sample Donations – A Family Affair
• Twist on CRISPR Gene Editing Treats Adult-Onset Muscular Dystrophy in Mice
• Advocacy Update: the Affordable Care Act and the Supreme Court
• You're Invited to a Virtual Holiday Party!
• The Translational Genomics Group Takes microRNA Approach
• #SocksOnChallenge!
• Get Ready for #GivingTuesday!
• Inspector General Warns About New Social Security Benefit Suspension Scam. Watch the 60 second PSA on YouTube.
• My Featured Content: Support MDF with your Holiday Shopping on AmazonSmile!

October 2020

• Reflections on Successful MDF Virtual Family Conference
• Join us for the 2020 Virtual Gala Next Friday!
• Summer Volunteer Finishes US Financial Resources Suite!
• Join the Myotonic Dystrophy Family Registry!
• Connect with MDF Support Group Facilitators & Find Upcoming Meetings
• MDF Advocates are the Key to a Cure
• JOA Connections with Support Group Facilitator Ann Woodbury
• Register for the (VIRTUAL) 5th Annual UPIN Family Conference!
• My Featured Content: Access Recorded Virtual Conference Sessions on the MDF Digital Academy!

August 2020

• Myotonic Dystrophy Foundation Brand Refresh
• Conference Registration is now Available!
• We Want to Hear from You!
  • What Does the Myotonic Dystrophy Foundation Mean to You?
  • Share your Family Story!
• MDF is thankful for our Incredible Support Group Facilitators!
• New DM Resource: Guide for JOAs and their Caregivers
• How a Couple that Dreamed of Travel Found a Way Around DM
• Research Participation Opportunity: DM1 & DM2 in New England:
  • Study 1: Ages 14+
  • Study 2: Ages 5+
  • Study 3: Ages 5+
• Community Advocate Participates in Third PRMRP Review
• You're Invited to Connect with Industry Partners working on DM Therapies
• 2020 Virtual Gala: Save the Date!
• My Featured Content: Access our video catalog on the MDF Digital Academy!

July 2020

• The Myotonic Annual Conference is Going Virtual!
• Sign Up for the Advocacy Workshop this Monday, 7/20!
• We Want to Hear from You!
  • What Does the Myotonic Dystrophy Foundation Mean to You?
  • Share your Family Story!
• New Myotonic Dystrophy Resources Available:
  • Role of Physical Therapy in the Assessment and Management of Individuals with Myotonic Dystrophy
  • Exercise Guide for Individuals with Myotonic Dystrophy
• PREFER Project: DM1 Survey!
• DM2 Research Opportunity in North Carolina!
• 2020 Virtual Gala: Save the Date!
• Lucie Griffiths: Community Moderator Q&A
• Joel Revill: Journey to the Myotonic Board
• Questions about Nutrition & DM?
• My Featured Content: Join our Virtual Community Groups!

June 2020

• A Message from Myotonic's CEO on Resilience
• Midyear Survey: Let Us Know What You Think!
• Don't Miss our Last Friday Afternoon Webinar!
• Cooking Video Contest: Congratulations Dean & Jay!
• Progress in the Congressional Campaign to Increase Funding for DM Research! Join the Advocacy Workshop!
• Myotonic Dystrophy iPSC Library & Drug Development Pipeline!
• New Myotonic Dystrophy Resources Available!
• A Mother's Story - Elizabeth Florence
• Thank You Serena Master! 2019-2020 Myotonic Intern
• My Featured Content: Help drive care and a cure with the Myotonic Grassroots Fundraising Toolbox

May 2020

• Myotonic is Moving to a New Location!
• New Friday Afternoon Webinars!
• Cooking Video Contest: Food Preparation for the DM Community!
• Share your Gratitude!
• Take a Break! An Introduction to Mindfulness & Guided Meditation
• Have you met Miles the Myotonic Lion?
• Participate in 2 Research Surveys: Newcastle University: The PREFER Project and University of Rochester: A Patient-Focused Survey to Assess the Effects of the COVID-19 Pandemic on Patients with Muscular Dystrophy
• 2021 Request for Fellowship Applications
• My Featured Content: Myotonic Grassroots Fundraising Toolbox

April 2020

• Friday Afternoon Webinar Series
• Myotonic Publishes Clinical Care Recommendations for Pulmonologists
• New Resources Available!
• April Advocacy Update
• The Herbert Family's Journey
• Join the Myotonic Dystrophy Family Registry
• Financial Resource Guides Available!
• My Featured Content: Stay connected with Virtual Community Groups!

March 2020

• A Message from Myotonic's CEO about COVID-19
• Myotonic Publishes Clinical Care Recommendations for Cardiologists
• Congressional Leadership Award & Advocacy Update
• 2020 Research Fellows Announced
• Medical School Roadshow visits UC Irvine
• Rare Disease Day Report
• Massive Success for Topgolf Tournament for Myotonic
• My Featured Content: Stay connected with Virtual Community Groups!

February 2020

• Advocate for DM Research Funds
• Participate in Clinical Trials
• Topgolf Tournament for Myotonic
• Myotonic Publishes Paper on CNS Outcome Measures in DM
• Report Out: Community Call
• Summer Camp is Back!
• My Featured Content: Don't miss the DM2 Virtual Support Group Meeting on Feb. 20!

December 2019

• Join the Myotonic Dystrophy Family Registry
• Topgolf Tournament for Myotonic
• Patient Experiences with Cannabinoids in DM
• Update! Tips for Traveling with DM
• Find a Doctor
• My Featured Content: Study & Trial Resource Center

November 2019

• The 2019 Myotonic Annual Gala Raises over $1M!
• Myotonic Medical School Roadshow
• Research News: Understanding Falls in DM Patients
• Spreading Knowledge to Nurses
• Support Myotonic for the Holidays!
• DM2 Clinical Recommendations for Adults with DM2 on PubMed; Find it on Myotonic.org
• My Featured Content: Support Myotonic on #GivingTuesday

October 2019

• The 2019 Myotonic Annual Conference Is A Wrap!
• Tools and Tips for Daily Living Activities
• Join Us for Yale DM Day!
• Status Report: Genome Editing in DM1
• Support Myotonic for Halloween & the Holidays!
• My Featured Content: The 2019 Myotonic Gala is almost here!

September 2019

• Hello Myotonic!
• Julia Thorsness: Social Worker Turned Caregiver Becomes Support Group Facilitator
• 2019 Myotonic Annual Conference Livestream
• MDF Partners
• My Featured Content: Interactive Conference Agenda
• More News: The 2019 Myotonic Gala is next month, get your ticket!

August 2019

• Berglund Lab’s Shotwell Awarded Myotonic Fellowship
• 2019 Myotonic Annual Conference-It's Not Too Late!
• Myotonic's First Camp JOA Is a Hit
• Myotonic DM Day Program - Mini-conferences Near You
• Get Support, Give Support by Hosting an Myotonic Group
• Party in Hollywood at the 2019 Myotonic Gala!
• Featured Web Content: Watch DM and Genetics: Your Questions Answered

July 2019

• Myotonic Leadership Transition
• Myotonic 2019-2020 Fellow Dr. Shruti Choudhary Is Focused on Small Molecule Therapies for DM1
• Tribute to Erich Maurer from Leslie Krongold
• Fundraising Campaign and Advocacy Award Created to Celebrate the Life of Kayla Vittek
• Luke Bolt Surpasses $10,000 Fundraising Goal!
• Myotonic Community Forum Update
• 2019 Myotonic Annual Conference Regular Registration Ends August 1st!
• Featured Web Content: Webinar! DM and Genetics: Your Questions Answered

June 2019

• DM Family Sets $10,000 Fundraising Goal for Seattle to Portland Bike Ride
• Don't miss Myotonic's Away Camp for JOAs
• Jensen Crawfish Boil Huge Success!
• Myotonic Support Group Shout-out!
• IDMC 2019
• 2019 Myotonic Annual Conference Tickets and Lodging Available!
• Featured Web Content: Myotonic Approaches 5k Facebook Likes!

May 2019

• Myotonic Launches Away Camp for JOAs!
• Fundraising for DM Research, a Family Affair for Tim Haylon
• Audentes Therapeutics Announces DM Drug Development Program
• Myotonic Advocacy Update
• Myotonic Family Day at Great America
• 2019 Myotonic Annual Conference Tickets and Lodging Available!
• Featured Web Content: Webinar: Facilitating Social Interaction in Myotonic Dystrophy with Dr. Missy Dixon

April 2019

• Dr. Vincent Dion Awarded $250,000 Myotonic Grant to Pursue Cure for DM
• Research Participants Needed for Important DM Study
• Participants Needed for Study Focused on Children with Genetic Disorders
• 2019 Myotonic Annual Conference Tickets and Lodging Available!
• Decline in Daily & Social Activities in DM1
• Join Myotonic at The MIC in NYC!
• Featured Web Content: Help Relaunch Myotonic's Medical School Roadshow!

March 2019

• New Study on Cognitive Function and Neuroimaging in Myotonic Dystrophy
• Cycling to Drive Awareness and Hope
• Shamrocks and Shenanigans!
• Virtual DM2 Support Group
• Juvenile-onset Adults Program
• 2019 Myotonic Annual Conference Tickets and Lodging Available April 2!
• Going to School with Myotonic Dystrophy - Get Your Copy
• Featured Web Content: Get Ready for World Sleep Day, March 15!

February 2019

• Advancing DM Research Click by Click
• Rare Disease Day 2019
• Find Your Support!
• Juvenile-onset Adults Program
• Save the Date for the 2019 Conference!
• Featured Web Content: Find a Doctor Map

January 2019

• Atlanta Support Group Provides Southern Comfort to DM Patient
• Tips for Traveling with DM
• New DM2 Virtual Support Group
• Get Ready for Rare Disease Day 2019
• Save the Date for the 2019 Conference!
• Featured Web Content: Myotonic Clinic Visit Planner, download now or request a physical copy.

December 2018

• Helping Herself by Helping Others
• Jody Nixon: Report Out on the November Caregiver Call-In
• The Origin of Insulin Resistance in DM
• DM Advocate Glen Wiggans Participates in Federal Grant Review
• 2018 HI Gala - Getting Away for a Good Cause
• Featured Web Content: DM Advocacy Update and Training - Winter 2018

November 2018

• For Israel Dubin, Living with DM2 Is A Matter of Perception
• MDF Brand Review and Update in the Works
• What We Do (And Don't) Know About Cognitive Function in DM1
• Donate on #GivingTuesday and Double Your Gift!
• AMO Pharma Press Release Provides Its Analysis of Phase 2 Study Results
• Help Convince Congress to Support Care and a Cure for Myotonic Dystrophy
• Featured Web Content: Grassroots Fundraising

October 2018

• The 2018 MDF Annual Conference: It's Going to Be Hard to Top!
• Consensus-based Care Recommendations for Adults with Myotonic Dystrophy Type 1 Published
• MDF Hawaii Gala: Live Auction Preview!
• New Iceland Myotonic Dystrophy Association Will Help DM Patients
• The Future of Genetic Therapies
• GuideStar Transparency Seal Upgrade!
• New Support Group - Ann Arbor, MI!
• MDF Phone Buddies Program
• Myotonic Dystrophy Again Approved for Important Defense Funding Program!
• Featured Web Content: Caregiver Call-in phone meeting

September 2018

• Watch the MDF Annual Conference Live!
• Pharmaceutical Industry Professional and DM Caregiver Joins MDF Board
• Denis Duboc Is Committed to Understanding What Drives Cardiac Issues in DM Patients
• MDF Advocates Participate in PRMRP Review
• What Drives Respiratory Function in DM1?
• Featured Web Content: Genetic Testing & Diagnosis

August 2018

• Understanding Differences Between Myotonic Dystrophy Patients
• Kennedy Krieger Recruiting for DM2 Natural History Pilot
• DM "Super Advocate" Teresa Buffone Helps Open New Neuromuscular Center
• OPTIMISTIC View of DM1
• GuideStar Transparency Seal!
• How a Couple that Dreamed of Travel Found a Way Around DM
• Carolyn Valek Selected As a Patient Representative for CDMRP
• Donate to MDF by August 10th & get a gift from Eric!

July 2018 Dispatch

• Richard T. Moxley, III, MD Tribute Program
• MDF and Wyck Foundation Grant Announcements 2018
• Conference Session Spotlight: Symptom Burden - Changes Over TIme
• Welcome Leah Hellerstein, Program Director!
• Check Out MDF's First #DGT4MDF!

June 2018 Dispatch

• Joel Revill: Welcome to the Board!
• New and Improved Digital Academy
• Senator Plays Role in Getting DM Access to New Federal Research Funds
• A DAMN GOOD TIME! Tonight!

May 2018 Dispatch

• Gene Editing: The Hope and the Hype
• Determining DM Patients at Greatest Risk for Cardiac Problems
• Last Chance for Early Bird Registration at the 2018 MDF Annual Conference!
• Comedian Nikki Glaser Joins A DAMN GOOD TIME!

April 2018 Dispatch

• Time to Party to Make Myotonic Dystrophy History!
• 2018 MDF Annual Conference Registration Open!
• Dr. Meola Provides Insights into Insulin Resistance
• Dealing with the Decline of the Executive Functions of the Central Nervous System

March 2018 Dispatch

• Speech Disorders in Congenital and Childhood DM1
• A Recruiter Gets Recruited
• Thanks Dr. John Porter, Welcome Dr. Lisa Ackermann!
• A Damn Good Time: A Party to Make Myotonic Dystrophy History!

February 2018 Dispatch

• Comorbidity of Childhood DM1 and Autism?
• Linda Marshall: Journey of Grace
• MDF 2018 Board and Community Leadership Summit

January 2018 Dispatch

• MDF Receives $1M Donation To Launch Gene Editing Program For DM1
• MDF Funds Expansion of the DMCRN
• MDF Community Member Mindy Kim Is Published DM Advocate
• New Biotech Company Announces Major Funding For DM Therapy Development
• Wyck Foundation and MDF Award $300,000 In New Research Fellowships

December 2017 Dispatch

• MDF Advocates Win! US Senate Adds DM to Premier Pentagon Research Program
• Tom McPeek - Staying Positive
• In Memory of Andrew Linbeck – MDF Friend, Donor, and Partner
• 2017 Bade Fisher Memorial Golf Tournament a Smashing Success

November 2017 Dispatch

• Life With DM In Poland: Overcoming Barriers & Finding Support
• Bringing Creativity to the DM Experience: MDF Community Authors and Artists
• Charity Navigator: Why Isn't MDF Listed?
• Finding Clarity In A Diagnosis

October 2017 Dispatch

• Mark Your Calendars - the 2018 MDF Annual Conference is in Nashville!
• MDF Secures Compassionate Allowance Designation for Congenital Myotonic Dystrophy
• Marsha Dugan: Becoming A Leader For Care and A Cure
• New Study Provides Information Important to Developing Clinical Trials for CDM

September 2017 Dispatch

• Risk of GI Manifestations in DM1 and DM2
• Interim Results Released for AMO Pharma Clinical Trial
• It's Not Too Late! Register for the MDF DM Day: Orlando, FL
• 2017 MDF Annual Conference Videos and Presentations Now Available

August 2017 Dispatch

• Last Chance to Avoid Late Registration for the 2017 MDF Annual Conference
• Modifying Gene Editing Technology for DM
• Know Your DM1 Repeat Length: It’s Important for Your Cardiac Care
• New! MDF Care Programs Report
• Made to Measure: Developing Clinical Tools to Capture the Severity and Progress of DM

July 2017 Dispatch

• The MDF Annual Conference that Made the Difference
• MDF Successfully Launches MDF DM Days
• Interactive Resource Workshop, Clinical Trial Endpoints Session Are New Programs at 2017 MDF Annual Conference

June 2017 Dispatch

• The Path We’re On: Many Challenges, but Ultimately a Drug
• Book Your Hotel Room Now for the 2017 MDF Annual Conference
• Gaining a Better Understanding of DM: The Susannah Savitsky Story
• Myotonic Dystrophy PFDD Meeting Report Submitted to FDA

May 2017 Dispatch

• Early Bird Registration Ends June 2nd!
• JOA Scholarships Available for 2017 MDF Annual Conference
• Telling the Quacks from the Cures
• Inheritance of CDM
• MDF Publishes First Article in Scientific Journal

April 2017 Dispatch

• Early Bird Registration Open for the 2017 MDF Annual Conference
• MDF Launches First MDF DM Day in Iowa
• Eric Hutchinson Shares "Dear Me" Music Video with MDF Community
• A Journey from Nurse to Caregiver
• Myotonic Dystrophy: A Grandson's Perspective

March 2017 Dispatch

• Mark Your Calendars! Registration Opens April 3rd for the 2017 MDF Annual Conference
• MDF Statement Regarding the American Health Care Act
• Using Gene Editing to Correct DM
• Improving Clinical Trials for DM Therapies

February 2017 Dispatch

• Creative Events Raise Funds for Care and a Cure
• Treating Sleep Disorders in DM1
• Last Chance to Request Your Lab Coat
• Every Body Counts: Zenica Sanford
• Research Fellow Profile: Łukasz Sznajder

January 2017 Dispatch

• MDF Finished Year 10 with Flying Colors
• Ionis Pharmaceuticals Reports on DMPKRx Phase 1/2 Clinical Trial
• Singer Eric Hutchinson Launches New Album and Pledges to Donate Proceeds to MDF
• MDF Kicks Off Rare Disease Day 2017 with Every Body Counts! Campaign
• Every Body Counts: Mary Dowdle
• Cognitive Changes in Adult DM1: An Acceleration of Normal Aging?
• Wyck Foundation and MDF Announce Grant Awards

December 2016 Dispatch

• MDF to Move Care and a Cure Agenda Forward at January Planning Offsite
• Eric Hutchinson Raises Funds for Care and a Cure
• MDF Readies for 2017 Rare Disease Day
• Give the Gift that Helps a Whole Community (See Newsletter)
• Research Fellow Profile: Dr. Laura Renna

November 2016 Dispatch

• MDF Celebrates 10 Years of Success
• IDMC-11 and MDF Annual Conference in San Francisco in Fall 2017
• Update: IONIS-DMPKRx Phase 1/2a Study
• Prescriptions and DM Patients: Who Is Taking Their Meds?
• MDF on the Road
• Research Fellow Profile: Dr. Ginny Morriss
• NIH Now Requires the Posting of Failed Trial Data

October 2016 Dispatch

• MDF Gala Celebrates Progress
• MDF Releases New Short Film, "DM Heroes"
• Families Helping Families: Sarah and David Berman
• Register Now for Free Webinar on Palliative Care
• MDF Welcomes New Communications Manager Jazzy Wright

September 2016 Dispatch

• MDF Honors Community Leadership Award Winners
• MDF Annual Conference a Huge Success!
• Gala for Care and a Cure Held in San Francisco
• DM to Guest Star on UK Television?

August 2016 Dispatch

• Singer Raises DM Awarness with Album Launch
• Last Call for the 2016 MDF Annual Conference
• Grandparents: Share the Joy!
• Research Fellow Profile: Dr. Benjamin Gallais
• Research Update from U. of Florida
• New Grants Awarded

July 2016 Dispatch

• We're Making an Impact Together!
• New Grants Drive DM Research
• Tips for Research Participants Make Every Body Count
• Family Fundraiser Hits $100,000 Mark
• MDF Featured in San Francisco Business Times
• It's Not Too Late to Register for the 2016 MDF Annual Conference

June 2016 Dispatch

• We Are Stronger Together! 
• Coming Soon: DM Clinical Care Recommendations
• Don't Miss Our Legislative Update Webinar
• Study Examines Disease Impacts on Quality of Life of People Living with DM2
• Do You Know a DM Superstar?
• MDF Fellow Uses Stem Cells in Search for DM Therapies

May 2016 Dispatch

• Help a DM Family and We'll Double Your Donation!
• Catching Up With MDF's Interim CSO, Dr. John Porter
• Financial Aid is Available for the 2016 MDF Annual Conference
• Applying Gene Editing Technology to RNA Diseases
• Gender Matters in DM1

April 2016 Dispatch

• Help the FDA Review Potential DM Therapies
• Molecular Changes Lead to Cardiac Dysfunction in DM
• Ionis Pharmaceuticals Reports on Studies
• New Findings on the DM1 DNA Mutation
• MDF Welcomes Dr. John Porter as Interim Chief Science Officer

March 2016 Dispatch

• Meet Paul Formaker on MDF's Warmline
• Community Voice: Joachim Boekelmann
• University of Iowa Launches Brain-Imaging Study
• Glass Half Full
• Dr. Charles Thornton Wins Prestigious Javits Award

February 2016 Dispatch

• Ionis Pharmaceuticals Currently Recruiting for Clinical Trial
• MDF Commissioned Studies Give Insight Into DM & Pregnancy, Childhood DM Care
• Every Body Counts Campaign - Win an Autographed Lab Coat (See Newsletter)
• I Loved Being a Research Participant!
• Ottawa Advocate in the News!
• Families Raise Support for DM (See Newsletter)

January 2016 Dispatch Vol. 2

• Save the Date: 2016 MDF Annual Conference
• International Alliance Formed for Care and a Cure (See Newsletter)
• MDF and Wyck Foundation Announce 2016 Research Fellows
• MDF Welcomes New Staff
• MDF Offsite Sets the Stage for 2016
• February is Rare Disease Month (See Newsletter)

January 2016 Dispatch Vol. 1

• MDF Community Supports Care and a Cure (See Newsletter)
• Making an Impact: MDF 3.0
• Isis Pharmaceuticals Becomes Ionis Pharmaceuticals
• MDF Kicks Off the New Year (See Newsletter)

December 2015 Dispatch

• Common Symptoms of DM2 and Their Impact on Daily Living

• Critical Accolades for "Hazel"

• Care Just Got Sweeter (See Newsletter for details)

• Join the Club

• Expanding the DM Community with New Support Groups

• Tips for JOA Caregivers

November 2015 Dispatch

• Reaping the Rewards of an Unexpected Role

• Community Perspectives on Future Drug Benefits and Risks

• Caregiving Today: A Review

• Isis Pharmaceuticals Update

• Bioworld Today: Social media is a breeding ground of threats for clinical trials

October 2015 Dispatch Vol. 2

• New Potential Antisense Drug for DM1

• Updates on Research: Report from the 2015 MDF Annual Conference

• Grandparents Campaign a Great Success

• Next Month: Celebrate Caregivers!

October 2015 Dispatch Vol. 1

• A Couple Copes With DM

• On October 13th: Advocate for a Cure!

• Clinical Trial Update: Currently Recruiting

• Are You an Annual MDF Conference Attendee?

September 2015 Dispatch Vol. 2

• Getting Closer to a Cure and as a Community at the 2015 MDF Annual Conference

• Watch Presentations From the Annual Conference Online 

• Grandparents Campaign Update

• Myotonic Reaches 3,000 Fans on Facebook

September 2015 Dispatch Vol. 1

• The Kiryakoza Family: Special Attention Helps a Son with DM

• First MDF Family Day a Success

• Meet Our New Staff and Scientific Advisors

• Community Voices Heard Around Capitol Hill

August 2015 Dispatch Vol. 2

• Putting DM Front & Center with the FDA

• Updated: The MDF Body Systems Tool

• Deep Dive on Research at the 2015 MDF Annual Conference (See Newsletter for details)

• New! Recognition Program for Clinical Coordinators (See Newsletter for details)

August 2015 Dispatch Vol. 1

• The Valek Family: A Spouse Becomes a Patient Advocate

• With Trust Comes Strength: Mike Hamlin's Journey to Support Group Facilitating

• Wanted: Your Family Members for the 2015 Grandparents Campaign

• MDF Conference: Find Community With Us!

July 2015 Dispatch Vol. 2

• DM and Duchenne Muscular Dystrophy: Is There a Link?

• Satisfy a Craving for Research at the 2015 MDF Annual Conference

• Congress is Listening! (See Newsletter for details)

• Miles of Fun Await the Next Host

July 2015 Dispatch Vol. 1

• The Herbert Family's Journey

• Careful! Social Media Can Undermine Clinical Trials

• Care and a Cure for Your Grandchild

• MDF Family Day in San Francisco

• Congress to Vote on 21st Century Cures Act

June 2015 Dispatch Vol. 2

• Highlights from IDMC-10

• Recognizing Outstanding Community Members

• Share Your Voice with Congress

• Care and a Cure for Your Grandchild

June 2015 Dispatch Vol. 1

• The Fitzpatrick-Vassallo Family: A Message of Hope

• Be Part of IDMC Through Live-Stream

• Say Hello to Miles the Myotonic Lion

• MDF Advocacy Update: We Need Your Help!

• Annual Crawfish Boil a Huge Success

May 2015 Dispatch Vol. 2

• Darren Monckton: Studying the Causes of DM Disease Severity

• Understanding DM Prevalence

• Possible Muscle Damage Pathway Identified in DM1

• Research at the 2015 MDF Annual Conference

May 2015 Dispatch Vol. 1

• The Korsgaards: From Coping to Community Engagement

• MDF 3.0: Accelerate Roadmap to Care and a Cure

• MDF Toolkit Now Available in Multiple Languages

• Upcoming Webinars

April 2015 Dispatch Vol. 2

• Myotonic Mice: An Interview with Dr. Genevieve Gourdon

• Modifying the DNA of DM Stem Cells to Treat DM

• Dash for DM at the San Francisco Marathon

• The Medical School Roadshow Needs You!

April 2015 Dispatch Vol. 1

• Register Now for the MDF Annual Conference!

• The Esparis-Kugler Family: A Physician's Family Confronts DM

• Update Your Contact Information

March 2015 Dispatch Vol. 2

• Dr. Benedikt Schoser: Focus on the Patient

• MDF Weighs in on Government Plan for Muscular Dystrophy

• Breathing Issues and DM

• From MDF to You and Back Again

March 2015 Dispatch Vol. 1

• The Schmertman Family: Adapting to Life's Challenges

• Care and a Cure on Capitol Hill

• Have Your Questions Answered at IDMC

• Update Your Address Books!

February 2015 Dispatch Vol. 2

• MDF Needs Your Input! 2015 Communications Survey

• Countdown to IDMC-10: Meet Dr. Bé Wieringa

• MDF Workshop Examines Clinical Trial Endpoints and Biomarkers

• Healthy Heart Information for American Heart Month

February 2015 Dispatch Vol. 1

• The Road Ahead: MDF Strategic Planning Report

• Rare Disease Day 2015

• Sign Up for the Medical School Roadshow

January 2015 Dispatch Vol. 2

• Current DM Research Updates

• MDF Toolkit Now Available in German

• Upcoming Webinar: Nutrition Information Related to DM

January 2015 Dispatch Vol. 1

• Alain Geille: Making a Difference in France and at Home

• Rare Disease Day 2015

• Fund-A-Fellow Grants Awarded for 2015-2016

December 2014 Dispatch

• Webinar: Clinical Trials 101
• Sarah and Zoé Berman: A Story of Hope and Recovery
• Dr. Tetsuo Ashizawa: Tackling DM from Basic Research Through Clinical Care
• Celebrating MDF Support Groups

November 2014 Dispatch Volume 2

• MDF Launches Clinical Trials Resource Center
• 2nd Annual Myotonic Dystrophy Information Meeting
• Join MDF on #GivingTuesday!
• 2014 Grassroots Year in Review

November 2014 Dispatch Volume 1

• Nominate Your Caregiver!
• Larry Lord: Devoted Father Find Balance as DM Caregiver
• Grandparents Campaign a Success!
• Care and a Cure in 2015: How You Can Help

October 2014 Dispatch Volume 2

• Celebrate Caregivers
• Survey Positions 2014 MDF Annual Conference as the Most Successful to Date
• Endocrine Function in DM1 Patients
• Join us in Boston on November 7!

October 2014 Dispatch Volume 1

• The Pontifex Family: Strength Through Community
• Celebrate Caregivers
• Update Your Registry Information by October 31
• MDF Merchandise Now Available

September 2014 Dispatch Volume 2

• 2014 MDF Annual Conference: What a Weekend!
• MD-CARE Act Passes!
• Toxic RNA Research Update

September 2014 Dispatch Volume 1

• New and Improved MDF Website
• University of Iowa to Launch a Multidisciplinary DM Clinic
• Join the 2014 MDF Annual Conference Livestream Broadcast

August 2014 Dispatch Volume 2

• MDF Launches a New Look!
• New Research: Parental Age Effects in the Transmission of DM1
• Join the Myotonic Dystrophy Family Registry

August 2014 Dispatch Volume 1

• Laura Gershenson: Giving Back to the DM Community
• MDF is Launching a Blog!
• The DMCRN: Community Follow-Up

July 2014 Dispatch Volume 2

• The DMCRN: Expanding the Scope of Research
• Research News: DM2 Small Molecule Study
• Upcoming Webinar: Sleep Issues Associated with DM

July 2014 Dispatch Volume 1

• Christian and Kelly Lundy Help Others with DM Find Support
• Scientific and Clinical Community Provides Guidance: Dr. Darren Monckton
• Grandparents Campaign: Sign-Up By August 7

June 2014 Dispatch Volume 2

• DM2 Patients and Statins: New Research
• The Christopher Project Patient Survey Launched
• 500 Voices Campaign Launches with SpeakingPhoto
• Movement in the House on the MD-CARE Act

June 2014 Dispatch Volume 1

• A Father's Story in Honor of Father's Day
• Fundraisers Exceed Expectations!
• Help Shorten the DM Diagnostic Odyssey: Volunteer with the Medical School Roadshow
• Update: Isis Phase I Clinical Trial

May 2014 Dispatch Volume 2

• MDF Advances DM Research with Fund-A-Fellow Grants
• Stanford University Announces the Creation of Myotonic Dystrophy Biobank
• MDF Dysphagia Recipe Contest!

May 2014 Dispatch Volume 1

• Amy Ream Doesn't Let DM Define Her
• River's Ride: Father and Son Cycle Across Iowa
• Join the Grandparents Campaign!

April 2014 Dispatch Volume 2

• DM Research Studies on Facial Recognition and Sleep Disturbances
• MDF Announces Fund-A-Fellow Success!
• Dash & Dine for DM

April 2014 Dispatch Volume 1

• Erich Maurer: Seeing DM From a New Perspective
• Expanded Programming at the 2014 MDF Annual Conference
• Learn How You Can Help Bring DM to Capitol Hill

March 2014 Dispatch Volume 2

• Dr. Matt Disney Talk About DM2 Research
• Genetic Testing for Myotonic Dystrophy
• Pregnancy Study Seeks Participants
• Orphan Drug Designation Given to a DM Drug Under Development at Valentia Biopharma
• Muscles for Myotonic 2014

March 2014 Dispatch Volume 1

• The Reebers: Casting Light on DM2
• Save the Date for the 2014 MDF Annual Conference
• MDF Goes to Washington
• Webinar: Living with DM2
• Join Our Virtual Caregiver Support Group

February 2014 Dispatch

• Meet DM Pioneer Dr. Richard Moxley
• Rare Disease Day: Help Us Advocate for DM
• Webinar: Tips for Parents Caring for Children with Congenital DM1
• First-Annual Stanford DM Information Meeting a Success

January 2014 Dispatch Volume 2

• New Studies Shed Light on Cardiac Complications and Toxic RNA
• Help with Rare Disease Day Advocacy
• Referral List Renamed, Adds Functionality
• Annual Offsite Meeting
• "The Facts" Now Available in French

December 2013 Dispatch Volume 2

• MDF Fellow Measures the Impact of Childhood DM on Quality of Life
• Grassroots Year-In-Review
• Hope & Inspiration: MDF Community Voices
• Webinar: Tips for Coping with Depression Associated with Having a Chronic Health Condition
• 2013 Annual Conference Videos Available in Digital Academy

December 2013 Dispatch Volume 1

• Jessica's Story: A Tale of Three Sisters
• Meet Conor, MDF's Newest Team Member
• Learning More About Caregiver Needs
• Webinar Provides Insights on Caregiver Needs

November 2013 Dispatch

• A Champion for Young People: Diane Bade's Story
• IDMC-9: Q&A with Dr. Tom Cooper
• Care & A Cure: We Need Your Help
• Webinar: On Being a Fearless Caregiver

October 2013 Dispatch Volume 2

• MDF on the Road: Fall 2013
• Latest Webinar Sheds Light on Specific DM Challenges
• How Support Groups Can Make a Difference

October 2013 Dispatch Volume 1

• Mary and Caroline: Two Sisters' Journeys
• Nominate Your Caregiver!
• "The Facts" Now Available in Spanish, Italian and Portuguese!
• 2013 MDF Annual Conference is Around the Corner
• Recommend a Medical Professional

September 2013 Dispatch Volume 2

• Highlights of Current DM Research
• Myotonic Dystropy Family Registry - Explore the Data!
• Upcoming Webinars: "Disclosing and Talking about DM" and "Treatment Options for Pain"
• An Update on the Grandparents Campaign

September 2013 Dispatch Volume 1

• Grandmother Travels the World to Help Her Grandchild
• Recruiting for Congenital DM Study
• Tell Us About Your Caregiver

August 2013 Dispatch Volume 2

• The DM Diagnostic Odyssey
• Tips on Managing Dysphagia
• New Speakers Announced for 2013 MDF Annual Conference
• Enter the Summer Registry Contest

August 2013 Dispatch Volume 1

• A Mother and Grandmother's Quest
• Medical Professionals Referral List
• Grandparents Take Charge

July 2013 Dispatch Volume 2

• Timeline of Key DM Research Discoveries
• MDF's First Webinar Uploaded to New Digital Academy
• Saddle Up for the 2013 MDF Annual Conference

July 2013 Dispatch Volume 1

• Cecilia's Family
• Grandparents Day: A Letter from Sharon and Mollie
• Tune In for the First MDF Webinar

June 2013 Dispatch Volume 2

• Impact of Childhood and Congenital DM on Quality of Life
• Tell Us Your Story
• Meet the MDF Team
• Registry Now Over 900

June 2013 Dispatch Volume 1

• Saurabh Rai: Staying Positive, Staying Active
• Webinar Series: We Asked, You Answered
• 2014 Fund-A-Fellow Program Now Open
• 2013 MDF Conference News

May 2013 Dispatch

• Register for the 2013 MDF Annual Conference
• Help Us Launch the MDF Webinar Series
• Get Involved with TeamMDF
• Renee's Story: Discovering Her Life's Path

April 2013 Dispatch

• Join the Family Registry, Win an iPad Mini!
• New Study Provides Hope for Treatments
• TeamMDF Needs Your Referrals
• Save the Date for the 2013 MDF Annual Conference

March 2013 Dispatch

• MDF Launches the Myotonic Dystrophy Family Registry
• High School Basketball Team Champions Inclusiveness Through Athletics
• Dr. John Day Discusses Stanford's New Center for DM Care and Research
• Help MDF Name the eNewsletter

February 2013 Dispatch

• New DM Family Registry Coming Soon!

January 2013 Dispatch

• Launching Next Month: the DM Family Registry
• Ritalin Could Curb Excessive Daytime Sleepiness in DM1 Patients
• MDF Awards $200,000 for Research into Treatments for Myotonic Dystrophy
• 2013 Annual Conference Planning: We Need Your Input
• "Dine Out for DM" and Honor Global Rare Disease Day

December 2012 Dispatch

• Coming Soon: the MDF Patient Registry
• Double the Impact of Your Gift to MDF This Season
• TeamMDF Volunteer Opportunity: Help Build the Physician Referral List
• A Mother's Story: Elizabeth Florence

October 2012 Dispatch

• Financial Resources for Families Living with DM
• TeamMDF Has Launched and We Need You
• Mexilitine for Myotonia: A New Use for an Old Heart Drug?
• Holiday Shopping Made Easy

September 2012 Dispatch

• TeamMDF Launching Soon
• MDF Video Academy - Family and Researcher Interviews Added
• MDF Welcomes New Board Members

July 2012 Dispatch

• Antisense: A New Treatment for Myotonic Dystrophy
• Isis Pharmaceuticals Presents First-Ever Pharma Research Update at 2012 MDF Annual Conference
• Soaring Beyond DM: Kaliana and the Opera Singer
• MDF 2012 Annual Conference Program Update