NAZWA ORGANIZACJI:          Beyond Labels & Limitations 

STRONA INTERNETOWA:              www.BeyondLabelsLimitations.com

FACEBOOK:     https://www.facebook.com/groups/29111827568/

YouTube Channel:   www.youtube.com/user/John71377

 

WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON: 

LGMD2A / kalpainopatia

JEŚLI KONCENTRUJESZ SIĘ NA PODTYPIE, CZY ISTNIEJE REJESTR I W JAKI SPOSÓB PACJENCI MOGĄ DO NIEGO DOŁĄCZYĆ?

Koalicja na rzecz leczenia kalpainy 3 maintains the Global LGMD2A Patient Registry which can be accessed online.

IS YOUR ORGANIZATION A NON-PROFIT:        

Yes, we are a 501(c)3 non-profit organization.

CO ZAINSPIROWAŁO POWSTANIE TWOJEJ ORGANIZACJI?:

I, John C.Graybill II, established BL&L for two reasons. The first reason was to raise money for research. From 1995 until 2006 every year I’d go see my neurologist and he would tell me there isn’t any news in terms of a treatment. I wanted to change that. The second reason I established BL&L was to raise awareness through my videos. At the time there wasn’t anyone recording their progress of LGMD and there wasn’t anyone out there that I could connect with. By making videos I opened the door for others to connect with me and not feel alone.  My videos are available on YouTube

JAKA JEST MISJA ORGANIZACJI:

To support rigorous scientific research for LGMD2A and to educate others on the disease course, as recounted through my personal experience.

JAKIE USŁUGI ŚWIADCZY TWOJA ORGANIZACJA:

Online peer support system through Facebook.  The group that I established is “Limb Girdle Muscular Dystrophy:  Beyond Labels and Limitations” and currently has over 3,000 members from around the world.  The group is open to anyone with any form of LGMD and at any stage of the disease process.

Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?

Contributing $50,000 towards research.

Co chcesz, aby świat dowiedział się o TWOJEJ ORGANIZACJI?:

That if you want to make a difference you can do it by taking one step at a time.

W JAKI SPOSÓB LUDZIE MOGĄ ZAANGAŻOWAĆ SIĘ WE WSPIERANIE ORGANIZACJI:

Donate and/or join the LGMD Facebook group.  Donations can be made online.

JAKI JEST NAJLEPSZY SPOSÓB KONTAKTU Z ORGANIZACJĄ:

Contact John C. Graybill II  by  email at  jcg713@aol.com

CZY JEST COŚ JESZCZE, CO CHCIAŁBYŚ DODAĆ?

The cure is out there.