230 Lancaster Avenue Richmond, KY 40475|nubpl.org@gmail.com
Loading...
Home2021-05-10T16:39:46+00:00
Our mission is to raise awareness and fund research towards the development of life-saving treatments and a cure for NUBPL, a mitochondrial complex 1 deficiency disorder.
NUBPL is a progressive neurodegenerative disease that affects children. There are zero FDA approved treatments for this disease. Patients with NUBPL present clinical symptoms between the ages of 3-24 months, including onset neurological symptoms: cerebellar dysfunction – progressive cerebellar & pons hypoplasia, global developmental delay, inability to walk, ataxia, nystagmus, and speech articulation difficulty.

Researchers are studying NUBPL to discover a treatment, and hopefully, a cure. Every dollar donated is filled with hope. Help keep hope alive for their future by making a tax-deductible donation today.

Recent News

1005, 2021

CALL FOR PATIENTS with NUBPL-RELATED MITOCHONDRIAL DISEASE

If you are currently living with NUBPL-related Mitochondrial Disease, you may be eligible to participate in a research study. The Mitochondrial Medicine Frontier Program is looking for individuals with NUBPL- related Mitochondrial Disease to participate in a NUBPL Natural History Study at CHOP. See flyer for details.

2711, 2018

Father fighting for daughter’s life is nominated for Eagle Rare Life Award

Richmond’s Dave Faughn has been nominated for the 2019 Eagle Rare Life Award for his devotion to finding a diagnosis and cure for his 7-year-old daughter Katherine’s rare genetic disease, NUBPL. If he wins, Faughn will receive $50,000 for the NUBPL Foundation, the non-profit he co-founded with wife Glenda McCoy

1710, 2018

Help NUBPL Foundation win $50k

What began as a father’s desperate pursuit of a diagnosis for his daughter’s mysterious disease has evolved into David Faughn’s life-long commitment to pioneering medical research and promoting legislation to ensure medical coverage for affected patients. David Faughn embodies character. Of the many characteristics encapsulated in the Eagle Rare Life

908, 2018

‘Kentucky Gives Day’ raises $222,195 in 24 Hours

Nonprofit organizations participating in Kentucky Gives Day raised a collective $222,195 on April 18 in the state’s fifth annual 24-hour online giving campaign. The event now stands with $1,335,300 raised by participating nonprofits over five years. This year brought together 1,808 donors who made over 2,000 gifts to 139 nonprofit

908, 2018

Hope for Katherine Belle

David Faughn entered parenthood the way many fathers do: suddenly, hopefully, and at a bit of a loss about what to do. Katherine lay on her mother’s belly having spent 40 weeks within it. Her father was a foreigner to her. Or that’s how it seemed to Dave. The “ten months

Go to Top