KURULUŞUN ADI:         The Speak Foundation

WEB SİTESİ:              www.thespeakfoundation.com

FACEBOOK:        www.facebook.com/THESPEAKFOUNDATION

 

KURULUŞUNUZ HANGİ LGMD ALT TİPİNE ODAKLANIYOR: 

All forms of neuromuscular diseases including LGMD.

Kuruluşunuz Kar Amacı Gütmeyen bir kuruluş mu? Eğer öyleyse, ne tür:        

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

KURULUŞUNUZUN KURULMASINA NE İLHAM VERDİ?:

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.

KURULUŞUNUZUN MİSYONU NEDİR:

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

KURULUŞUNUZ HANGI HIZMETLERI SAĞLIYOR:

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.

KURULUŞUNUZUN EN ÇOK GURUR DUYDUĞU ŞEY NEDIR?

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

Dünyanın KURULUŞUNUZ hakkında ne bilmesini istersiniz?:

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.

İNSANLAR KURULUŞUNUZU DESTEKLEMEYE NASIL DAHIL OLABILIRLER?

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

KURULUŞUNUZLA ILETIŞIME GEÇMENIN EN IYI YOLU NEDIR?

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

EKLEMEK ISTEDIĞINIZ BAŞKA BIR ŞEY VAR MI?

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/