Our Village
Because it really does take a village to save a rare child - you can help.
Support Our Cause
Our Funds
Miren's Marathon
Miren’s Marathon is a fundraising campaign to raise money to research and develop a drug to treat Miren’s specific genetic mutation with the hope of helping other children affected by CACNA1A.
In partnership with The Foundation for Batten Hope, your donation will support the families expenses while receiving gene therapy for terminal Batten CLN7 disease in 2021-2022.
Cure SURF1 Foundation
The Cure SURF1 Foundation was founded by a group of families who each have a child diagnosed with SURF1 Leigh Syndrome. Their mission is to advance research efforts related to SURF1 Leigh Syndrome.
Cure ATP6
Cure ATP6 helps fund a cure for Leigh syndrome resulting from a mutation in the MT-ATP6 gene. Leigh syndrome is a rare neurodegenerative disease that affects infants and children.
Sebastian's Voice
Sebastian’s Voice is a fund supporting the research and development of ASO therapy to find a cure for Skraban Deardorff syndrome (SDS). Donate and help them find Sebastian’s voice!
Cure SPG4 Foundation
Cure SPG4 Foundation’s 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.
Cameron's Crusade
Cameron’s Crusade is a fund supporting the research and development of a therapy to treat those with a PI4KA mutation. Donate and join us on Cameron’s Crusade!
Cure ATRX
Cure ATRX is a fund supporting the research and development of a cure for those affected by ATRX. Donate today and help children like Benjamin who are affected by ATRX.
Riaan Research Initiative
Riaan Research Initiative is dedicated to funding intelligent and innovative scientific research to accelerate the development of viable treatments for Cockayne Syndrome.
Cure GABRB2
Cure GABRB2 is dedicated to funding research for GABRB2, a rare neurological condition that causes seizures, movement disorders, and a range of disabilities.
Finding Hope for FRRS1L
Finding Hope for FRRS1L is dedicated to funding research for FRRS1L, a rare gene disorder that results from a mutation and resulting loss of function of the FRRS1L gene.
Scarlett's Village
A fundraising campaign to raise money for research and development for a drug to treat Scarlett’s specific gene mutation, with hope of helping other children affected by GABRA1 and other GABA-A mutations.
MAO Deficiency Foundation
A fundraising campaign to raise money to fund gene therapy as a cure for monoamine oxidase A and monoamine oxidase B (MAO A/B) deficiencies that affect children like Sam.
CSNK2B Foundation
The mission of CSNK2B Foundation is to bring awareness and education to POBINDS and to enrich the lives of those affected by accelerating research, treatments and by chasing a cure for CSNK2B.
Juju's CLN2 Warrior Foundation
Juju’s CLN2 Warrior Foundation mission objective is to fund research for the development of gene therapies for CLN2.