The Chion Foundation is a small nonprofit with the mission of improving the quality of lives of families touched by PWS and other rare diseases. Our work is performed entirely by volunteers.
Pitolisant has been approved in Europe for the treatment of narcolepsy and cataplexy. We believe that it has the potential to be extremely beneficial for individuals with Prader-Willi Syndrome.
Accordingly, we have systematically gathered data on the clinical experience of individuals with PWS who have taken pitolisant and have a publication in press in the peer-reviewed literature documenting the benefits to children with PWS.
We also have presented to the Food and Drug Administration on our patient experience data to approximately 20 FDA employee, received a commitment from Harmony Biosciences (US distributors of pitolisant) to perform a clinical trial in patients with PWS, and will be presenting our data at the 2019 FPWR (Canada) meeting, the American Academy of Neurology 2019 Annual meeting, and at the 2019 SLEEP meeting.
We spend our donated funds primarily on our pitolisant patient experience study (to support ten families currently gathering long-term to document the impact of pitolisant in their child with PWS), on travel to communicate that patient experience, and on publishing and conference fees to communicate that data.
If you would like to make an offline donation, checks may be sent directly to the Chion Foundation:
c/o Lara Pullen
745 S. East Ave.
Oak Park, IL 60304
The Chion Foundation is a nonprofit, tax-exempt charitable organization under Section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law (Tax ID 81-1167193).