조직 이름: CureLGMD2i Foundation
웹 사이트: www.curelgmd2i.com
페이스북: www.facebook.com/CureLGMD2i/
조직이 중점을 두고 있는 LGMD 하위 유형은 무엇인가요?
LGMD2i and The Dystroglycanopathies (FKRP)
하위 유형에 초점을 맞추는 경우 레지스트리가 있으며 환자는 어떻게 가입할 수 있나요?
FKRP Registry at https://www.fkrp-registry.org
귀사는 비영리 단체인가요? 그렇다면 어떤 유형인가요?
Yes, U.S.-based 501 (c)(3) tax-exempt public charity
조직을 만들게 된 계기:
CureLGMD2i was initially founded as the Samantha J. Brazzo Foundation by the Brazzo family in 2011, after their young daughter, Samantha, was diagnosed with LGMD2i. They realized that there were no other organizations raising funds specifically for research for 2i, so they created this non-profit foundation to raise money and awareness toward a cure for this rare and progressive condition.
조직의 미션은 무엇인가요?
To raise funds to spread awareness and support scientific research that is geared directly toward creating a successful treatment or cure for LGMD2i.
조직이 제공하는 서비스
Providing financial support for the Dystroglycanopathy Family Conference in Iowa and research projects to build a better understanding of the progression of LGMD2i, drug development and building a successful gene therapy program for LGMD2i.
To date, the CureLGMD2i Foundation has provided over $400,000 to research programs that are working aggressively to establish a treatment for LGMD2i.
귀사의 가장 자랑스러운 점은 무엇인가요?
We most recently sponsored an “Into the Clinic” gene therapy meeting that was held at UMass that brought together top scientists and companies in the field of 2i to provide an update on pre-clinical work and clinical trial readiness. This meeting resulted in the creation of an LGMD2i Gene Therapy Steering Group, which be working on helping to establish a future clinical trial.
귀사에 대해 전 세계가 알았으면 하는 것은 무엇인가요?:
We are the only organization that accepts tax-deductible donations with 100% going directly to research related projects for Limb Girdle Muscular Dystrophy Type 2I.
사람들이 조직을 지원하는 데 어떻게 참여할 수 있을까요?
Right now we are having a major push on Facebook for fundraising to support a future gene therapy clinical trial in LGMD2i. “Spring into Action” by creating your own Facebook fundraiser – tell your circle of friends/family how LGMD2i has affected you, what you would do when you are cured, and ask for donations to support CureLGMD2i. You can also share the donation tab to our website at https://curelgmd2i.com/donations
조직에 연락하는 가장 좋은 방법은 무엇인가요?
Contact Kelly Brazzo at kbrazzo@yahoo.com or message us through our Facebook page at https://www.facebook.com/CureLGMD2i
추가하고 싶은 내용이 있나요?
If you have a confirmed diagnosis of LGMD2i – please make sure to register in the Global FKRP Registry at https://www.fkrp-registry.org #Strengthinnumbers!
