LGS Foundation
The Lennox-Gastaut Syndrome (LGS) Foundation (LGSF) is a 501(c)(3) international non-profit organization based in the United States. The mission of the LGS foundation is to improve the lives of individuals living with Lennox-Gastaut Syndrome, a rare and severe form of epilepsy, through research, family support programs, and education. It is a Guidestar Platinum organization.[1]
Programs
Programs of the LGS Foundation include a research grant program, a patient assistance program, LGS Awareness Day, an International Family and Professional conference, support groups, and more.
Research Grant Program
Research grants are offered to young and established investigators who seek to better understand, treat, and cure LGS.
International LGS Family and Professional Conference
Every 18 months, the LGS Foundation organizes a comprehensive, three-day educational meeting for families and professionals working in the epilepsy field. Over 325 individuals attended the most recent conference in Orlando, FL.[2]
Patient Assistance Program
This program offers patient assistance grants to patients with LGS for items that are not typically covered through insurance.[3]
LGS / EGI Exome Project (LEEP)
LEEP is an acronym for LGS / EGI Exome Project. Launched in 2016, this project provides families with free whole exome sequencing in an effort to help understand the cause of an individual's Lennox-Gastaut Syndrome.[4]
Current Professional Advisory Board Members
Anup Patel, MD - Chair, Nationwide Children's Hospital
Brenda Porter, MD, PhD Stanford
Heather Mefford, MD, PhD Seattle Children's Hospital
Tim Benke Children's Hospital Colorado
Susan Masino, PhD Trinity College
Zach Grinspan, MD Weill Cornell Medicine
Jeanne Paz, MD University of California San Francisco
Eric Marsh, MD, PhD Children's Hospital of Philadelphia
Fundraising
The LGS Foundation raises its funds through private donations, corporate partnerships, private grants, and fundraising events.
Awareness
The LGS Foundation raises awareness of Lennox-Gastaut Syndrome throughout the year and on International LGS Awareness Day, which takes place November 1 every year.[5] The awareness colors of LGS are sage green and lavender.
See also
References
- ↑ https://www.guidestar.org/profile/26-2051377
- ↑ http://www.digitaljournal.com/pr/3556275
- ↑ http://www.needymeds.org/copay_aos.taf?_function=detail&program_id=2739
- ↑ https://patientworthy.com/2017/09/04/lgs-lennox-gastaut-foundation-announces-partnership-cures/
- ↑ https://www.epilepsy.com/article/2014/3/lennox-gastaut-syndrome-awareness-day-adam-todd-runs-perseverance-and-hope
External links
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