NAME OF ORGANIZATION: The Speak Foundation
WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:
All forms of neuromuscular diseases including LGMD.
Is your organization a Non-Profit? If so, what type:
U.S.-based 501 (c)(3) tax-exempt public charity. All donations are tax deductible.
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION:
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.
wHAT IS YOUR ORGANIZATION’S MISSION:
To improve the quality of life for individuals living with physical disability.
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE:
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.
WHAT IS YOUR ORGANIZATION MOST PROUD OF:
Our yearly respite care conference which has helped over 500 individuals. We were the first patient run organization for muscular dystrophy in the nation.
What do you want the world to know about YOUR ORGANIZATION:
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.
HOW CAN PEOPLE BECOME INVOLVED IN SUPPORTING YOUR ORGANIZATION:
We would first ask them to volunteer as this is how people help the most.
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION:
You can contact Jessica by e-mail at [email protected]
IS THERE ANYTHING ELSE YOU’D LIKE TO ADD?
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/