We are the SPG15 Research Foundation
Understanding Hereditary Spastic Paraplegia Type 15
What is SPG15?
Hereditary Spastic Paraplegia Type 15 (SPG15) is a rare, neurodegenerative disease caused by mutations in the ZFYVE26 gene. The autosomal recessive genetic disorder is characterized by cognitive impairments, muscle stiffness, and paralysis of the limbs. Signs of SPG15 often become apparent in adolescence, and as the condition progresses many patients experience severe cognitive and physical decline.
What is the prevalence of SPG15?
SPG15 is ultra-rare, occurring in less than 100 patients globally. Unfortunately, as with many ultra-rare conditions, research is sparse – with limited data, geographic challenges, lack of advocacy, and research funding, etc. When research resources are not allocated and data cannot be connected, opportunities to advance discovery is limited.
About the SPG15 Research Foundation
The SPG15 Research Foundation promotes awareness, scientific discovery, and education related to this ultra-rare condition.
Alison Bushnell, a mother of 2 children with SPG15, started the foundation in June of 2018 and was granted 501(C)3 status in August 2019. In June of 2019, the foundation became a member of the RARE Foundation Alliance via Global Genes, which allows Alison to share her experiences with like-minded advocacy groups.
With few advocacy groups and no cure, many patients and their families are left to manage side effects, rather than focus on a scientific advancement.
Funding for the SPG15 Research Foundation will be utilized to:
Develop a patient registry in partnership with CoRDS
Create a natural history progression study of the disease in partnership with the NIH
Other research opportunities
Your donation has the ability to change the trajectory of science towards a cure for SPG15.