THE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHY

THE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHYTHE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHYTHE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHY

THE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHY

THE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHYTHE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHYTHE VOICE FOR LIMB GIRDLE MUSCULAR DYSTROPHY

OUR MOST RECENT LGMD WEBINAR BY SAREPTA THERAPEUTICS

"Introducing a New Limb-girdle Muscular Dystrophy Natural History Study" On Friday, September 11th, 2020 (from 12pm—1pm EST) Sarepta Therapeutics presented their new natural history study for the limb-girdle muscular dystrophy community during this online simulcast webinar hosted by the Speak Foundation. Sarepta provides an overview of the natural history study in addition to resources to stay connected.

LGMD DAY ON THE HILL

Download these items that were used for LGMD Day on the Hill on September 22nd, 2020. The info sheet allows you to explain your cause and what LGMD is all about to your congressman or congresswoman. You can attach this to your email or letter you send out to let Captiol Hill letting them know what issues matter to you.

LGMD Day on the Hill Info Sheet (pdf)

Download

LGMD Day on the Hill Letter (docx)

Download

Legislator Lookup and Sample Email (docx)

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THANK YOU TO ASKBIO FOR SPONSORING LGMD DAY ON THE HILL

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 like Limb Girdle Muscular Dystrophy.

COVID-19 RELIEF PROGRAM FOR LGMD INDIVIDUALS AND FAMILIES

Thank you to Sarepta Therapeutics for helping LGMD families!

Cycle Two for the COVID-19 relief program is now closed. Thank you to all our generous sponsors! TSF has given out thousands and thousands of dollars in direct support to families living with LGMD in 2020.

This program was funded by a generous grant from Sarepta Therapeutics and private donors. Cycle two ended on August 19th, 2020. Congratulations to families who were helped by this grant. The total amount of grants was over $60,000 to families to help with housing, food, personal care, and medications.