団体名:         The Speak Foundation

ウェブサイト              www.thespeakfoundation.com

FACEBOOK        www.facebook.com/THESPEAKFOUNDATION

 

あなたの組織はどのようなLGMDサブタイプに重点を置いていますか： 

All forms of neuromuscular diseases including LGMD.

貴団体は非営利団体ですか？もしそうであれば、その種類を教えてください：        

U.S.-based 501 (c)(3) tax-exempt public charity.  All donations are tax deductible.

組織創設のきっかけ:

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.

あなたの組織の使命は何ですか？

To improve the quality of life for individuals living with physical disability.

あなたの組織はどのようなサービスを提供していますか：

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.

あなたの組織は何を最も誇りに思っていますか：

Our yearly respite care conference which has helped over 500 individuals. We were the first patient run organization for muscular dystrophy in the nation.

あなたの組織について、世界に何を知ってもらいたいですか？:

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.

どのようにすれば、人々はあなたの組織の支援に参加できるのでしょうか：

We would first ask them to volunteer as this is how people help the most.

貴団体に連絡する最善の方法は何ですか：

You can contact Jessica by e-mail at jessica@thespeakfoundation.com

他に付け加えることはありますか？

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/