It is with great sadness and heavy hearts that the MDF mourns the passing of our founding chairman, Shannon Lord, who passed away on June 4, 2013. Shannon is survived by her husband, Larry Lord and her two adult sons, Hunter and Ashby.
On Rare Disease Day 2013 -- February 28th -- you'll be able to take a more active role in the fight against myotonic dystrophy (DM) by joining the new Myotonic Dystrophy Family Registry (MDFR).
Methylphenidate, a psycho-stimulant drug, also known by its 1948 trademarked name of Ritalin, could be useful in the treatment of excessive daytime sleepiness (EDS) for DM1 patients,
Help the research community better understand myotonic dystrophy and improve the lives of the people and families living with DM by joining the Myotonic Dystrophy Family Registry (MDFR), which will launch in February 2013.
MDF takes its role as an advocate for the myotonic dystrophy community very seriously; we are committed to increasing visibility and understanding of DM, improving the quality of life of people living with this disease, and doing our part to accelerate research progress toward treatments and a cure for DM.