НАЗВАНИЕ ОРГАНИЗАЦИИ:         The Speak Foundation

ВЕБ-САЙТ:              www.thespeakfoundation.com

FACEBOOK:        www.facebook.com/THESPEAKFOUNDATION

 

НА КАКОМ ПОДТИПЕ ЛГМД ФОКУСИРУЕТСЯ ВАША ОРГАНИЗАЦИЯ: 

All forms of neuromuscular diseases including LGMD.

Является ли ваша организация некоммерческой? Если да, то какого типа:        

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

ЧТО ПОСЛУЖИЛО ТОЛЧКОМ К СОЗДАНИЮ ВАШЕЙ ОРГАНИЗАЦИИ:

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.

какова миссия вашей организации:

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

КАКИЕ УСЛУГИ ПРЕДОСТАВЛЯЕТ ВАША ОРГАНИЗАЦИЯ:

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.

ЧЕМ ВАША ОРГАНИЗАЦИЯ ГОРДИТСЯ БОЛЬШЕ ВСЕГО:

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

Что вы хотите, чтобы мир узнал о ВАШЕЙ ОРГАНИЗАЦИИ:

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.

КАК ЛЮДИ МОГУТ ПРИНЯТЬ УЧАСТИЕ В ПОДДЕРЖКЕ ВАШЕЙ ОРГАНИЗАЦИИ:

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

КАК ЛУЧШЕ ВСЕГО СВЯЗАТЬСЯ С ВАШЕЙ ОРГАНИЗАЦИЕЙ:

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

ЕСТЬ ЛИ ЕЩЕ ЧТО-НИБУДЬ, ЧТО ВЫ ХОТЕЛИ БЫ ДОБАВИТЬ?

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/