Meet Noelle - your local Wonder Woman.
The epitome of STRENGTH, GRACE and LOVE, "Elle" lives with a rare neurodegenerative disease, BPAN. Despite her happy and loving disposition, she wages war with her brain to properly function. Elle lives with BPAN, an NBIA disorder.
Join "Noelle's BPAN Superheroes" to raise research funds for all of the superheroes facing this devastating disorder. You don't have to be in Ann Arbor to join us!
- Is a neurodegenerative disease that was discovered in 2012; about 500 people have been diagnosed worldwide
- Presents in children as global development delay, often with seizures
- Requires kids to endure endless hours of therapy to perform simple tasks like walking and speaking
- Progresses quickly in adolescence/early adulthood, causing permanent loss of the progress made through therapy
- Leaves patients with a severe movement disorder and dementia
- Results in a decreased lifespan
- HAS NO CURE, NO TREATMENT AND IS VIRTUALLY UNKNOWN
Learn more about Elle's story, BPAN and how you can help: https://www.firstgiving.com/fundraiser/saveBPANkids/EllesHugsofHope
Your support directly benefits the NBIA Disorders Association, a non-profit, 501(c)(3), founded in 1996. It is the only patient organization in the United States dedicated to finding a cure for NBIA disorders. www.nbiadisorders.org
NBIA: Neurodegeneration with Brain Iron Accumulation is a group of rare genetic disorders characterized by abnormal accumulation of iron in the basal ganglia. There are currently 10 different NBIA disorders.
BPAN: Betapropellar Protein Associated Neurodegeneration is caused by mutations in the gene WDR 45, located in the X chromosome.