COVID-19 SURVEY FOR INDIVIDUALS WITH MUSCULAR DYSTROPHY

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.

https://redcap.urmc.rochester.edu/redcap/surveys/?s=8XLPYCKJ9W

Download PDF

Upcoming Webinar for the LGMD Community

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.  

Download PDF
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COVID-19 RELIEF PROGRAM FOR LGMD INDIVIDUALS AND FAMILIES

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.  


Apply here: https://speakfoundation.wufoo.com/forms/qm6u1pu0pcfr8z/


Do you qualify?

  • Must have a subtype of LGMD
  • Reside in the USA
  • Demonstrate financial need


This program is funded by a generous grant from Sarepta Therapeutics and private donors.

COVID-19 ADVOCACY RESOURCES FOR MUSCULAR DYSTROPHY COMMUNITY

COVID-19 Advocacy Letter for Individuals with MD

Download PDF

Advocacy Letter to Healthcare Providers

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COVID-19 Preparedness Checklist

Download PDF
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Welcome to the Speak Foundation

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.