Please read information sheet first before taking the survey
The University of Rochester is doing a survey study to find out the various effects that COVID-19 has on individuals with LGMD and other forms of muscular dystrophy. This study will help clinicians understand how to better care for individuals during this pandemic. To participate, you will need to download the PDF information sheet included below first.
After doing so, you may click the link below. If it does not direct you to the survey, copy and paste the link into your preferred web browser.
Download form and click on link to Register.
The Speak Foundation in conjunction with GRASP LGMD and other industry partners will host a series of webinars launching our new CARE initiative to individuals with LGMD. CARE is a new program that helps to identify and connect newly diagnosed patients into our existing LGMD community.
American families are struggling right now due to COVID-19. Having Limb Girdle Muscular Dystrophy complicates financial circumstances due to medical costs. The Speak Foundation is happy to provide financial assistance in the form of a grant to qualified individuals. If you have a child with LGMD or you have LGMD, you qualify for this grant. Grant amounts are at $400 per household.
Do you qualify?
This program is funded by a generous grant from Sarepta Therapeutics and private donors.
The mission of the Speak Foundation is to improve the quality of life for those living with muscular dystrophy and to provide a voice for those living with rare diseases.
Our amazing team of volunteers are committed to helping others. Think you would be a good fit? Contact us!
Since 2008, TSF is the first patient run organization for muscular dystrophy. Thanks to the helping hands of this amazing community!
To speak up for those without a voice and to provide hope to those living with muscular dystrophy
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