December 2024
- Watch Now - Understanding Myotonic Dystrophy: The Basics!
- You Can Change the Future of Myotonic Dystrophy! Click here to donate!
- New Publication Provides New Insight into DM2 Symptoms !
- New: Maryland Myotonic Dystrophy Support Group!
- Nouveau: Groupe de Soutien International Pour les Francophones!
- Research Pilot Grant Feature: Paloma Gonzalez Perez, MD, PhD
- Research Pilot Grant Feature: Joel R. Chamberlain, PhD
- Apply Today for a 2025 MDF Pilot Grant by January 24th!
- Register for the 2025 MDF Conference!
- Calling All DM Professionals - Submit a Poster Abstract to the 2025 MDF Conference
- Watch Now - Understanding Myotonic Dystrophy: The Basics!
- December 2024 Updates to the Drug Development Pipeline!
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!