Click the links below to read past issues of the MDF Dispatch, or sign up to receive future email communications from the MDF!
2023 Newsletters
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
- 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:
2022 Newsletters
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:
2021 Newsletters
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!
2020 Newsletters
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
2019 Newsletters
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.
2018 Newsletters
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
2017 Newsletters
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
2016 Newsletters
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)
2015 Newsletters
December 2015 Dispatch
-
Care Just Got Sweeter (See Newsletter for details)
November 2015 Dispatch
October 2015 Dispatch Vol. 2
-
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
-
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
-
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
-
With Trust Comes Strength: Mike Hamlin's Journey to Support Group Facilitating
-
Wanted: Your Family Members for the 2015 Grandparents Campaign
July 2015 Dispatch Vol. 2
-
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
-
Highlights from IDMC-10
-
Care and a Cure for Your Grandchild
June 2015 Dispatch Vol. 1
-
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
-
Dash for DM at the San Francisco Marathon
April 2015 Dispatch Vol. 1
March 2015 Dispatch Vol. 2
March 2015 Dispatch Vol. 1
-
Have Your Questions Answered at IDMC
-
Update Your Address Books!
February 2015 Dispatch Vol. 2
-
MDF Needs Your Input! 2015 Communications Survey
-
MDF Workshop Examines Clinical Trial Endpoints and Biomarkers
February 2015 Dispatch Vol. 1
-
Rare Disease Day 2015
January 2015 Dispatch Vol. 2
January 2015 Dispatch Vol. 1
2014 Newsletters
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
2013 Newsletters
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
2012 Newsletters
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