조직 이름:          Beyond Labels & Limitations 

웹 사이트:              www.BeyondLabelsLimitations.com

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

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

 

WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON: 

LGMD2A/척추통증증후군

하위 유형에 초점을 맞추는 경우 레지스트리가 있으며 환자는 어떻게 가입할 수 있나요?

칼페인 치료를 위한 연합 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.

조직을 만들게 된 계기:

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

조직의 미션은 무엇인가요?

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

조직이 제공하는 서비스

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.

귀사의 가장 자랑스러운 점은 무엇인가요?

Contributing $50,000 towards research.

귀사에 대해 전 세계가 알았으면 하는 것은 무엇인가요?:

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

사람들이 조직을 지원하는 데 어떻게 참여할 수 있을까요?

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

조직에 연락하는 가장 좋은 방법은 무엇인가요?

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

추가하고 싶은 내용이 있나요?

The cure is out there.