Patient Advocacy Groups
Carter Foundation for Neurologic Research
Kids with SPG3A was established by two families with young children who have spastic paraplegia type 3A. The two families work closely with researchers and will share research updates with other families on the Kids with SPG3A Community Platform.
CureAP4 Foundation
"Cure SPG47" was initially founded in 2016 by the families of two newly diagnosed SPG47 patients, Molly and Robbie. At the time when these two families serendipitously met on Facebook, we were aware of just 9 additional documented cases of SPG47 worldwide. No research was being conducted on the disorder and no treatment options were being explored. The chance connection of these two motivated families lead to the forming of a 501(c)3 non-profit organization dedicated to raising funds and awareness about the disorder. As we learned more about the disorder and built an impressive scientific team, we decided to expand our non-profit mission to include all four of the AP-4 adaptor complex related sub-types of hereditary spastic paraplegia (SPG47, SPG50, SPG51 and SPG52). We are eager to find out what we can accomplish with a larger number of families pulling in the same direction!
CureSPG4 Foundation
Our mission is to increase awareness of SPG4 hereditary spastic paraplegia, provide a resource for patients and their families, and fund research to find a cure for SPG4 hereditary spastic paraplegia.
CureSPG50 Foundation
CureSPG50 is working with the world top scientists, labs and hospitals to make a gene therapy for SPG50. With the incredible support of tens of thousands from around the world we have raised enough money to begin building this life changing treatment.
Genetic Cures for Kids Foundation
Genetic Cures for Kids Inc (GC4K) is a not-for-profit charity run by a volunteer board. Every dollar raised goes explicitly to rare disease research programs and clinical trials to find cures for rare diseases. GC4K's first program is committed to finding a cure for SPG56.
Lilly and Blair Foundation
What began as two families fighting for their daughters' futures has grown into a national movement — one that’s rewriting what’s possible for children with de novo SPG4.
In little more than two years, we’ve united families, scientists, and industry leaders. We’ve hosted three NIH and Boston Children’s Hospital-partnered scientific symposia, launched a global support network, and funded multiple research initiatives — including a gene therapy program now advancing toward clinical trials.
Our most recent fundraiser gathered 130 golfers, over 200 dinner guests, and raised more than $110,000 in a single night.
Today, The Lilly and Blair Foundation is a driving force in de novo SPG4 research, funding, and awareness.
Spastic Paraplegia Foundation
The Spastic Paraplegia Foundation is dedicated to advancing research and finding cures for two groups of closely related, rare, and progressive neurological disorders. They are hereditary spastic paraplegia (HSP) and primary lateral sclerosis (PLS). These are neurological disorders affecting the voluntary muscles. The disorders are progressive and may lead to patients being unable to walk, and more.
The Maddi Foundation
The Maddi Foundation is changing the path of rare disease. By working on finding a cure for SPG15 it could lead to more understanding of new ways to treat other diseases.
The Maurya Koduri Foundation
Maurya Koduri Foundation was founded by Vamsi and Yashodha in 2023. Their 11 year old son, Maurya Koduri was diagnosed with de novo SPG4 hereditary spastic paraplegia. HSP has no cure. Since 2020, they have personally contributed and raised over $120,000 through various fundraisers and through this foundation. They have donated /granted over $55,000 grants to research to find a cure for hereditary spastic paraplegia. With HSP SPG4 being so rare, there is very little funding from the government. The costs for the research for human trials can be burgeoning and so they decided to establish a non profit organization to expand their horizons and reach out to a wider world. Maurya Koduri Foundation's mission is to increase awareness and fund research to find a cure for SPG4 hereditary spastic paraplegia.
Warburg Micro Research Foundation
The Warburg Micro Research Foundation is a parent-founded nonprofit dedicated to finding treatments for Warburg micro syndrome (SPG69), a rare and progressive neurological disorder. Its mission is to accelerate research and drug development to slow disease progression and improve quality of life for affected children.