Patient Advocacy & Orphan Drug Workshop - Hartford, CT

Connecticut Patient Advocacy & Orphan Drug Workshop

Date: Friday, May 3, 2019

Time: 8:30 AM to 3:00 PM

Location: Goodwin Hotel

1 Haynes Street
Hartford, CT 06103

All advocates are invited to attend and participate in the upcoming patient advocacy and orphan drug workshops. These free workshops feature an opportunity to speak directly with members of State Congress about the Orphan Drug Act. Light breakfast and lunch will be provided. For more information about this event and RARE:CT, visit the Rare Action Network Website.

Register for Free!

Date(s)

Fri, 05/03/2019 - 05:00AM

Myotonic Dystrophy News

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Research Fellowship Feature: Cécilia Légaré, PhD

Meet one of our 2025 Fellowship recipients, Cécilia Légaré, PhD! Dr. Légaré started her DM1 research in 2013 during an undergraduate internship and continued through her master’s. She published two first-author papers (Epigenomics, 2020; Neurology Genetics, 2019) and one second-author paper (Human Molecular Genetics, 2019). These were presented at 24 conferences, including IDMC-10 and IDMC-11. She now applies this expertise to DM1 research and is currently working on the project “Identification of a transcriptomic signature in myotonic dystrophy type 1”.

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Research Fellowship Feature: Diana Alejandra Madrid Fuentes, MSc

Meet one of our 2025 Fellowship recipients, Diana Alejandra Madrid Fuentes, MSc! Diana Madrid Fuentes’ journey in studying muscle health began in 2020 when she joined Dr. Ashley Weaver’s biomedical engineering lab as a Fulbright Scholar and master’s student from Honduras. In the summer of 2021, Diana Madrid Fuentes met Dr. Araya Puwanant, whose enthusiasm for studying DM and commitment to understanding neurobiology through imaging biomarkers inspired her to enter the field. Currently she is working on the project “Validating Muscle MRI as a Biomarker of Disease Status in DM2”. Diana Madrid Fuentes is committed to approaching the field with a fresh perspective and a dedication to advancing research and improving outcomes for DM patients and their families.

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Research Fellowship Feature: Louison Daussy, MSc

Meet one of our 2025 MDF Research Fellowship recipients, Louison Daussy, MSc! A fascination with the brain and central nervous system (CNS) disorders—sparked by the Téléthon event on French TV—inspired Louison to pursue a BSc in Life Sciences at Sorbonne University, focusing on neuroscience. During this time, they interned with Capucine Trollet’s group, optimizing immunolabeling techniques and using confocal microscopy to study oculopharyngeal muscular dystrophy. The MDF fellowship now supports their PhD project “DM1 Neuropathology: From Neuronal Morphology and Axonal Transport to the Reversion of Brain Disease” at the Centre de Recherche en Myologie in Paris.

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Community Interview: Barbara Ochoa, Support Group Facilitator

Barbara Ochoa is a dedicated Support Group Facilitator whose journey with DM has shaped her commitment to helping others. In this interview, Barbara shares how her family’s diagnostic journey inspired her to give back to the DM community.

Questions?

Request Warmline Support! MDF offers a professionally staffed Warmline for people living with myotonic dystrophy, their caregivers, medical professionals and others to ask questions, find support and guidance and, when appropriate, be connected to additional resources and services. Click here to request Warmline Support.

Additional questions? Contact MDF by email at info@myotonic.org or give us a call at 415-800-7777.