6 September 2024
Dear MDF UK Families and Supporters,
After nine impactful years, the Trustees of Myotonic Dystrophy Foundation UK (MDF UK) regret to inform you that our charity activities are winding down and we will be closing our doors. This decision has not been made lightly, but we believe it is in the best interests of the charity to do so.
Throughout our nearly decade long journey, we have been incredibly proud to support the advancement of research into myotonic dystrophy. Our work has contributed to significant progress, including advancing the drug development pipeline and the nurturing of emerging researchers in this field. We have funded 38 research grants, including 22 fellowships, each playing a vital role in the pursuit of a cure.
We have also had the privilege of collaborating with our sister organisation, the Myotonic Dystrophy Foundation (MDF; www.myotonic.org) in the United States, on many different initiatives. We are grateful that they will continue to further the purposes MDF UK has championed for the last 9 years and drive the global mission forward to improve care and find a cure. We believe MDF is successfully fulfilling the needs that MDF UK was originally created to address, and are confident that they will continue this important work in an even greater capacity, investing around the world and uniting the field. Critical resources for patients and clinical care teams may be found at www.myotonic.org.
We extend our heartfelt thanks to everyone who has donated to MDF UK to move our mission forward. Special thanks to those who contributed in memory and honor of their loved ones – please know that your donations contributed to funding our research grants and fellowships, helping us move closer to understanding and treating myotonic dystrophy.
If you are considering making a future donation to a UK charity focused solely on myotonic dystrophy for people of all ages, you could consider the Myotonic Dystrophy Support Group (MDSG). As the world’s first myotonic dystrophy patient advocacy organisation, they have a long-standing commitment to the myotonic dystrophy community. You can find more information on their website here: www.myotonicdystrophysupportgroup.org/
Thank you for your steadfast support and dedication to our cause.
With deepest gratitude,
MDF UK Board of Trustees
The Myotonic Dystrophy Foundation UK is dedicated to improving the quality of life of people living with myotonic dystrophy (DM), the most common form of muscular dystrophy, through funding for basic and translational research, and patient advocacy.
Myotonic dystrophy is the most common form of muscular dystrophy, affecting at least 1:8000 people worldwide. Considered the most variable disease in medicine, myotonic dystrophy (DM) is an inherited disorder that can appear at any age and manifests differently in each individual. DM can cause muscle weakness, atrophy and myotonia (prolonged muscle cramping), in addition to problems in the heart, brain and GI tract, and the endocrine and respiratory systems. Click here to learn more.
The Myotonic Dystrophy Foundation UK, formerly the Wyck Foundation, was founded in 2015 in London by a group of individuals who care deeply about supporting global efforts to improve the quality of life and circumstances of those living with myotonic dystrophy through efforts to accelerate the discovery of treatments.
A list of current Myotonic Dystrophy Foundation UK trustees is available here.
The Myotonic Dystrophy Foundation UK Funds:
- Basic and translational research focused on finding treatments and a cure for myotonic dystrophy
- Advocacy efforts to improve access to care and enhance the regulatory pathway