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!
- Welcome, Mike Knaapen, MDF's New Program Director!
- 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!