Myotonic Dystrophy Foundation

Time 2020-10-21 01:04:22

Web Name: Myotonic Dystrophy Foundation

WebSite: http://www.myotonic.org

ID:88839

Keywords:

Myotonic,Dystrophy,Foundation,

Description:

Clinical Care Recommendations MDF has published the first-ever Consensus-based Care Recommendations for DM1, CDM and DM2! Download and share them with your clinicians and help us improve care for DM families! Get the recommendations New Toolkit For DM Parents Going to school with myotonic dystrophy? Check out MDF's guide to understanding special education and the Individuals with Disabilities Education Act. Learn More Help Find a Cure for DM Join the Myotonic Dystrophy Family Registry today and help us better understand and improve the lives of the people and families living with DM. Join Now Reflections on Successful MDF Virtual Family Conference I hope that you and your families are safe and well. Even though COVID-19 has presented many challenges, I would like to share with you a wonderful Myotonic Dystrophy Foundation success story that only came about because of the pandemic. Rather than taking a year off, the MDF hosted its first virtual annual family conference, which took place three weeks ago. Read the rest Summer Volunteer Finishes US Financial Resources Suite The MDF Team would like to extend a huge thanks to our Summer Volunteer, Mollie Allred, for completing our series of US Financial Resources! Read the rest MDF Advocates are the Key to A Cure Since our founding in 2007, Myotonic Dystrophy Foundation advocates have been educating Congress on the need for increased myotonic dystrophy research funding, working with the Social Security Administration to eliminate red tape for individuals with congenital myotonic dystrophy, and leading initiatives with the U.S. Food and Drug Administration to accelerate drug development and better understand the desires of individuals living with myotonic dystrophy. Read the rest Myotonic Dystrophy Foundation Brand Refresh Over the last six months, our new CEO had the privilege of speaking with hundreds of stakeholders throughout the DM ecosystem. Through these discussions, a clear pattern emerged that the adoption of the shortened name “Myotonic” was not having the positive impact intended. Read the rest Myotonic Dystrophy Foundation663 Thirteenth Street, Suite 100 | Oakland, CA 94612Phone EmailToll Free (US only): 86-MYOTONIC (866-968-6642)Direct: 415-800-7777info@myotonic.org

TAGS:Myotonic Dystrophy Foundation 

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Helping families living with myotonic dystrophy by delivering comprehensive support resources, and driving research to accelerate the discovery of DM therapies.

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