Click the links below to read past issues of the MDF Dispatch, or sign up to receive future email communications from the MDF!
November 2024
- Watch Now - Understanding Myotonic Dystrophy: The Basics!
- Early Bird Registration Ends December 2nd - Register Now!
- Share How MDF Has Affected Your Life!
- Meet the DM Drug Developer with Lupin Neurosciences!
- Watch the Ask the Expert: Gastrointestinal Issues & DM
- Watch the Ask the Expert: Reproductive Health & DM
- Support MDF in Honor of #GivingTuesday - December 3rd!
- New Research Suggests Novel Approach to Reducing Cardiac Issues in DM
- Apply Today for a 2025 MDF Pilot Grant!
- Meet the 2024 MDF Pilot Grant Recipients!
- Calling All DM Professionals - Submit a Poster Abstract to the 2025 MDF Conference
- Let the World Hear From You - Join the Myotonic Dystrophy Family Registry!
October 2024
- Register for the 2025 MDF Annual Conference!
- The World Glows Green for the 4th International Myotonic Dystrophy Awareness Day!
- Take Action on International Myotonic Dystrophy Awareness Day!
- Congratulations on the City of Ocala, FL Proclamation!
- Watch the Ask the Expert: Gastrointestinal Issues & DM
- Watch the Ask the Expert: Reproductive Health & DM
- Meet the DM Drug Developer with Lupin Neurosciences!
- Avidity Biosciences Announces FDA Removed Partial Clinical Hold on del-desiran
- New Texas Support Group
- Expand Your Knowledge with Our 2024 MDF Regional Conference Recordings!
- ARTHEx Biotech Doses First Patient in ArthemiR Trial for DM1!
- MDF's 2024 Gala Raises $1.5 Million!
- Research Archive: Recent Study on Repeat Expansion Diseases
- MDF Pilot Grants - Submit Your Application Today!
- Check out the Latest Updates to the Drug Development Pipeline!
- Remembrance of Glenda Winson, MDF Support Group Facilitator
- Let the World Hear From You - Join the Myotonic Dystrophy Family Registry!
September 2024
- Take Action on International Myotonic Dystrophy Awareness Day!
- Congratulations on the City of Ocala, FL Proclamation!
- Watch the Ask the Expert: Genetic Testing & Counseling
- Explore DM Resources & Share Them With Your Care Team!
- Watch the Meet the DM Drug Developers with ARTHEx Biotech
- MDF Publishes the 2023 Annual Report to Our Community!
- Last Chance - Apply for 2025 MDF Research Fellowships & Grants!
- Save the Date for the 2025 MDF Annual Conference!
- The 2024 MDF Gala Returns to Los Angeles, CA!
- Read PepGen's latest Advocacy Update!
- Let the World Hear From You - Join the Myotonic Dystrophy Family Registry!
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!
- 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!
- 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!
- 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!
- Massachusetts General Hospital is Recruiting for the study, Cerebrospinal Fluid Biomarkers of Myotonic Dystrophy!
- 2024 MDF Regional Conferences Conclude with Inspiring Successes!
- 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!
- 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!
- 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!
- 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!
- 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!
- Calling All DM Researchers Around the Globe: Apply for Millions of $ in Peer Reviewed Medical Research Program (PRMRP) Grants!
- 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!
- 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?
- 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?
- 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!
- 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!
- 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! !
- 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.
- 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!
- MDF Advocates Work to Secure Federal Myotonic Dystrophy Research Funding
- 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!
- 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!
- 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!
- 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!
- 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!
- Request for Applications Open - 2024 MDF Research Fellowships & Early Career Grants!
- Meet Mindy Kim - Community Outreach Specialist
- Update Your Myotonic Dystrophy Family Registry Profile Today!
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My Featured Content:
May 2023
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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:
- Download the Myotonic Dystrophy Anesthesia Guidelines - Ahora 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!
- 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!
- 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!
- Thank You Jennifer Kang! 2022-2023 MDF Intern
- Request for Applications Open - 2024 MDF Research Fellowships & Early Career Grants!
- Update Your Myotonic Dystrophy Family Registry Profile Today!
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My Featured Content:
April 2023
- Request for Applications Open - 2024 MDF Research Fellowships & Early Career Grants!
- 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!
- MGH Uses Targeted Drug to Restore Muscle Strength and Correct Myotonia in Mice with DM1
- Investigating the safety of baliforsen (ISIS 598769), an ASO targeting DMPK mRNA.
- You're Invited to the 2023 MDF Annual Conference!
- 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!
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My Featured Content:
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
- Access Our Video Catalog on the MDF Digital Academy!
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Does Your Doctor Understand Myotonic Dystrophy?
- Have You Joined the Myotonic Dystrophy Family Registry?
- MDF Continues Search for Chief Science Officer!
- Applications for Summer Internships at MDF Open Now!
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My Featured Content:
February 2023
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February is Rare Disease Month!
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Save the Date for the 2023 MDF Annual Conference!
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Does Your Doctor Understand Myotonic Dystrophy?
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My Featured Content: MDF is recruiting volunteer leaders and employees!
January 2023
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Congress Ensures DM Remains Eligible For PRMRP Research Funding For Sixth Year in A Row
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New Sites Recruiting for Harmony Biosciences DM1 Trial
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My Featured Content:
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
- 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
- Participate in DM Research - Join the Myotonic Dystrophy Family Registry!
- All 2022 MDF Annual Conference Photos Available Now!
- Join the Global Alliance for Myotonic Dystrophy Awareness!
- Support MDF for the Holidays!
- Jennifer Kang Joins MDF as Public Health Intern
- 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: - 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:
- Medicare Open Enrollment - Now Until December 7:
- Rock Your Myotonic Dystrophy Awareness Gear!
- Are You Ready for the Giving Season?
- My Featured Content: Volunteer & Career Opportunities with MDF!
September 2022
- Support Community, Care, and a Cure at the 2022 MDF Gala!
- DM Community Reunites at the 2022 MDF Annual Conference
- Industry Updates Available - More Session Recordings Coming Soon!
- 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:
- Opportunity for Adults with DM2 to Participate in a Research Study!
- Show You're Part of the Team - Order Your Myotonic Dystrophy In Motion Gear Today
- 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!
- Ask-the-Expert: Disability Rights, Future Planning & Special Needs Trusts
- Celebrate International Myotonic Dystrophy Awareness Day!
- Harmony Biosciences Updates 10 Sites in DM1 Study
- Avidity Bioscienes Enrolls Patients in the MarinaTM Open Label Extension Study
- 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:
July 2022
- 2022 MDF Annual Conference:
- Apply for a 2023 MDF Research Fellowship or Grant:
- 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:
- 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:
June 2022
- 2022 MDF Annual Conference:
- 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
- Celebrate Families Day at IDMC-13
- Watch the Recording! Ask-the-Expert: A Community Portrait through Surveys and Insurance Claims Data
- My Featured Content:
May 2022
- 2022 MDF Annual Conference:
- Myotonic Dystrophy In Motion
- Brito Family Celebrates World Bonsai Day with MDF
- MDF Advocates Unite to Increase DM Research Funding
- Requests for 2023 Research Fellowships & Grant Applications
- Community Interview: Sammy Ochoa
- Register for Our Upcoming Webinars:
- Healthy Living Discussion Group - Creating a Movement Practice - June 14
- Celebrate Families Day at IDMC-13
- My Featured Content:
April 2022
- Early Registration for the MDF Annual Conference Opens April 25th!
- Ask-the-Expert: Key Neuropsychological Features of DM1
- Belen Esparis, MD, Elected to MDF Board of Directors
- Learn How You Can Advocate for Federal Myotonic Dystrophy Funding
- 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: - 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:
March 2022
- Save-the-Date for the MDF Annual Conference - Sept. 9th & 10th
- Register for Ask-the-Expert: DM2 & Managing Pain on March 18th
- MDF & Marigold Foundation Report on DM & Insurance:
- Register for Meet the DM Drug Developers: Dyne Therapeutics on April 1st
- 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
- Rare Disease Day (RDD)
- Participate in DM Research Today!
- The Jackson Laboratory Releases e-Book on Rare Disease Odyssey
- 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!
- My Featured Content:
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 - 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!
- My Featured Content:
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!
- The Holidays are a Great Time to Connect with MDF Support!
- End the Year Dancing with MDF's Community Playlist!
- We're Hiring!
- My Featured Content:
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
- Medicare Open Enrollment - Now Until December 7th!
- 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:
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!
- Show Your Support with a Window Sign!
- 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!
- 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!
- 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
- 2022 MDF Research Fellowship Applications are Now Open!
- My Featured Content:
June 2021
- 2021 Virtual MDF Annual Conference, September 10-11
- 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!
- 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!
- 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:
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!
- Review Paper: Myotonic dystrophy type 1 drug development
- 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!
- 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
- Celebrate Rare Disease Day 2021!
- Be an MDF Advocate for Rare Disease Day!
- How well do you know MDF?
- 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!
- 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:
- 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!
- New Myotonic Dystrophy Resources Available:
- 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
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
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
-
Care Just Got Sweeter (See Newsletter for details)
November 2015 Dispatch
October 2015 Dispatch Vol. 2
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Updates on Research: Report from the 2015 MDF Annual Conference
-
Grandparents Campaign a Great Success
October 2015 Dispatch Vol. 1
September 2015 Dispatch Vol. 2
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Getting Closer to a Cure and as a Community at the 2015 MDF Annual Conference
-
Grandparents Campaign Update
September 2015 Dispatch Vol. 1
August 2015 Dispatch Vol. 2
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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
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With Trust Comes Strength: Mike Hamlin's Journey to Support Group Facilitating
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Wanted: Your Family Members for the 2015 Grandparents Campaign
July 2015 Dispatch Vol. 2
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Satisfy a Craving for Research at the 2015 MDF Annual Conference
-
Congress is Listening! (See Newsletter for details)
July 2015 Dispatch Vol. 1
-
Care and a Cure for Your Grandchild
June 2015 Dispatch Vol. 2
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Highlights from IDMC-10
-
Care and a Cure for Your Grandchild
June 2015 Dispatch Vol. 1
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Be Part of IDMC Through Live-Stream
-
Annual Crawfish Boil a Huge Success
May 2015 Dispatch Vol. 2
May 2015 Dispatch Vol. 1
April 2015 Dispatch Vol. 2
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Dash for DM at the San Francisco Marathon
April 2015 Dispatch Vol. 1
March 2015 Dispatch Vol. 2
March 2015 Dispatch Vol. 1
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Have Your Questions Answered at IDMC
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Update Your Address Books!
February 2015 Dispatch Vol. 2
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MDF Needs Your Input! 2015 Communications Survey
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MDF Workshop Examines Clinical Trial Endpoints and Biomarkers
February 2015 Dispatch Vol. 1
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Rare Disease Day 2015
January 2015 Dispatch Vol. 2
January 2015 Dispatch Vol. 1
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
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
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