Prion Alliance is a 501(c)(3) non-profit devoted exclusively to advancing scientific research towards a treatment or cure for human prion disease. Prion diseases are fatal neurodegenerative diseases caused by misfolded proteins and known by various names, such as Creutzfeldt-Jakob disease, fatal familial insomnia, and Gertsmann-Sträussler-Scheinker disease. At present, there is no treatment or cure. We — Sonia Vallabh and Eric Minikel — founded Prion Alliance as part of our scientific quest after we learned in 2011 that Sonia inherited a genetic mutation that causes prion disease. We are now PhD students in biology at Harvard Medical School, and we are based in Stuart Schreiber’s lab at the Broad Institute, where we work on developing therapeutics for human prion disease.
You can donate via PayPal to support our quest:
To learn more about our story, read one of these articles:
- Two-part NPR story on Morning Edition & All Things Considered, Rae Ellen Bichell, NPR, June 19, 2017
- A husband and wife’s race to cure her fatal genetic disease, Kathleen Burge, Boston Globe Magazine, February 17, 2016
- Insomnia that kills, Aimee Swartz, The Atlantic, February 5, 2015
- Computer scientist makes prion advance, Erika Check Hayden, Nature News, October 2, 2014
- A prion love story, D.T. Max, The New Yorker, September 27, 2013
Or watch one of these talks:
- Time equals lives: our journey from patients to scientists, Partnering for Cures, New York, NY. November 17, 2014.
- Crowd funding: a personal quest to cure prion disease, American Society of Human Genetics, San Diego, CA, October 18, 2014.
- Proteinaceous infectious optimism, Prion2014, Trieste, Italy, May 30, 2014.
Also, here are some handy facts about Prion Alliance:
- Prion Alliance was founded in June 2012 and received 501(c)(3) determination in October 2012.
- Board members: Sonia Vallabh (President), Eric Minikel, Greta Beekhuis
- Federal Tax ID (or EIN, for deducting your donation): 46-0732060