NOME DA ORGANIZAÇÃO: The Speak Foundation
SÍTIO WEB: www.thespeakfoundation.com
FACEBOOK: www.facebook.com/THESPEAKFOUNDATION
EM QUE SUBTIPO DE LGMD SE CONCENTRA A SUA ORGANIZAÇÃO:
All forms of neuromuscular diseases including LGMD.
A sua organização é uma organização sem fins lucrativos? Em caso afirmativo, de que tipo:
U.S.-based 501 (c)(3) tax-exempt public charity. All donations are tax deductible.
O QUE INSPIROU A CRIAÇÃO DA SUA ORGANIZAÇÃO:
There was a blank space of unaddressed needs in the muscular dystrophy community over ten years ago. We began in 2008 to address a variety of areas. Our name is based on a verse in the Bible “Speak up for those without a voice.” Our non-profit has given birth to many more movements and other non-profits.
qual é a missão da sua organização?
To improve the quality of life for individuals living with physical disability.
QUE SERVIÇOS PRESTA A SUA ORGANIZAÇÃO:
Assistance with employment barriers, psychological/spiritual support, quality of life issues, promotion of the overall welfare of the physically disabled worldwide, durable medical equipment needs, and access to medical care.
DE QUE É QUE A SUA ORGANIZAÇÃO MAIS SE ORGULHA:
Our yearly respite care conference which has helped over 500 individuals. We were the first patient run organization for muscular dystrophy in the nation.
O que quer que o mundo saiba sobre a SUA ORGANIZAÇÃO:
We care about your unaddressed needs and know your struggles. We are an organization made solely of volunteers who are also dealing with neuromuscular diseases.
COMO É QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO À SUA ORGANIZAÇÃO:
We would first ask them to volunteer as this is how people help the most.
QUAL É A MELHOR FORMA DE CONTACTAR A SUA ORGANIZAÇÃO:
You can contact Jessica by e-mail at jessica@thespeakfoundation.com
HÁ MAIS ALGUMA COISA QUE GOSTARIA DE ACRESCENTAR?
The 10th Anniversary of our Conferences for Individuals with Neuromuscular Disorders & their loved ones will be held in Atlanta, GA on Friday, July 6th – Sunday, July 8th, 2018. Registration is free. And, Michael Triplett, Ph.D., President, CEO, & Co-Founder of biotech company Myonexus Therapeutic will be joining us Saturday morning to speak on the Hope for Gene Therapies for LGMDs! This will be an exciting session for many, especially those of us with LGMD. You won’t want to miss it! We are pumped! Are you?”
You can still register to attend our upcoming conference! Registration is FREE. This isn’t just a conference for people in GA. People travel from all over and even come internationally! You can register and learn more at http://thespeakfoundation.com/conference/
