The Myotonic Dystrophy Foundation (MDF) has been an incredible resource for so many people, including me! As a volunteer, I’ve seen firsthand how they step up for families dealing with myotonic dystrophy, offering support, funding research, and building a real sense of community.
They connect people with the right experts, provide tools and resources that truly help, and bring everyone together at their annual conference to share knowledge and encouragement. It’s clear they care deeply about making life better for those affected.
I feel lucky to be part of an organization that’s so committed to driving progress and offering hope. MDF makes a real difference, and they absolutely deserve all the recognition and support they can get!
Myotonic Dystrophy Foundation is the leading global advocacy organization helping patients and families navigate life with myotonic dystrophy. This organization has helped change the landscape of this disease.
The MDF staff are an incredible asset for the community. Their work is guided by the core values of the organization - community, empathy, hope, collaboration, knowledge and urgency.
The Myotonic Dystrophy Foundation has changed our lives for the better. They were our first source of reliable information when we needed to learn about this disease. The Foundation has continued to provide updated info about research and support during our journey with this disease. The community is an incredible source for information and support.
The Myotonic Dystrophy Foundation is a godsend for the Myotonic Dystrophy Community. The foundation’s mission statement really sums it up: Community, Care and a Cure. I do not know where the DM community would be today without the foundation, their staff, doctors, researchers and volunteers.
Great organization that helped me a lot with their compassion and their knowledge when my family and I were navigating a scary time.
I've been a volunteer for MDF and am so impressed. Their team is well-organized, responsible and brimming with inspiring integrity and expertise. The CEO made me feel so welcome and connected to the mission. They have creative ideas and made it fun to volunteer.
Great foundation with a very important role for the myotonic dystrophy community.
The foundation provides important resources for both the patient and the professional community supporting finding a cure as well as improving care. Resources span everything from research grants to care guidelines and advocacy.
The Myotonic Dystrophy Foundation is incredible. They support our families, connect us with DM experts and life-saving resources, as well as provide details about drug development and cutting-edge research. I am especially grateful they continue to invest in DM research directly and that they advocate for more federal research funding to get us closer to a cure (and have been successful)!
The staff are knowledgeable and resourceful and have always gone above and beyond over the last 5 years I have engaged with them. Their CEO even calls me directly when I have had specific questions – they really understand our community!
MDF has been instrumental in helping me and my family learn about this little-known, but extremely impactful condition. Additionally, just becoming aware of the extended communities of families and others living with this condition has helped me understand how important it is to not be alone in the struggle. Thank you. MDF for being a lifeline for me and my family.