THE LIMB GIRDLE MUSCULAR DYSTROPHY FOUNDATION
THE LIMB GIRDLE MUSCULAR DYSTROPHY FOUNDATION
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We have curated the best information and research on LGMD. GRASP LGMD and all the world's leading pharma companies who are doing clinical trials are in this magazine. It is a unique resource and led by individuals living with Limb Girdle Muscular Dystrophy. Also, organizations all over the world have shared info on how to connect if you have a particular subtype and need additional help.
The Speak Foundation has chosen to highlight this disease community and our hope is to produce this research magazine for years to come. The focus of this magazine is Limb Girdle and individuals with this disease need detailed info as there are over 30 subtypes of LGMD. Our goal is to advance treatment outcomes with a revolutionary methodology where individuals with LGMD and researchers work together to find a cure.
If you are a company interested in advertising, we are happy to send you information on our ad spec sheet and how to advertise in our next edition. Contact us at firstname.lastname@example.org for more info.
The LGMD News Magazine offers free ad space to patient led nonprofits on a revolving basis. If you are a registered nonprofit, contact us. You may meet our criteria for free inclusion if you are an organization with a focus on Limb Girdle Muscular Dystrophy. The LGMD News Magazine is also a place where you can find out about the International Consortium of Limb Girdle Organizations all over the world.
Applications are now available for the Personal Care Attendant Program.
Apply today at our portal:
Are you working more than 30 hours a week and struggling with daily tasks to get work ready? Our Personal Care Attendant Program could help you. This program is for those living with Limb Girdle Muscular Dystrophy who work full-time in the USA. Please read requirements to see if you qualify!
It is so difficult for individuals who work full-time to get ready for work. Getting a bath, dressing, and other ADLs required to work create a huge problem as these services can cost so much. Most programs in the USA do not provide assistance for working Americans. Our program does though and it helps defray the cost with a $3000 one time grant to help pay for a PCA. The PCA program by the Speak Foundation is the first program of this kind in the USA for individuals with muscular dystrophy by a nonprofit organization.
This program has been in existence for 5 years and has helped many individuals in the USA.
"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.
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.
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.
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