GIVE PKAN WARRIORS A CHANCE!
Tax deductible
Who is Team Spoonbill?
We are the moms, dads, grandmas, and grandpas of kids battling PKAN. And we are on a mission.
PKAN (pantothenate kinase-associated neurodegeneration) is a rare genetic disorder that robs children of their speech, mobility, motor function and eventually -- often before the age of 10 -- their lives. PKAN is unspeakably cruel. Our kids' cognition and intellect remain intact while PKAN ravages their bodies and systems.
There is no treatment available for PKAN. Yet.
But there is hope.
Although PKAN is incredibly rare (and thus does not receive much attention from researchers and fundraisers), a team of amazing doctors and scientists at Oregon Health & Science University (OHSU) has developed a very promising treatment for PKAN, and is committed to bringing it to market. They are so, so close. Funding is (almost) all that stands between the compound they've developed and human trials. The OHSU team hopes to start human trials of their treatment yet this year. This is incredible news for the children suffering from this cruel disease. The sooner they can get the treatment, the better their chances of survival.
Time is not on the side of these kids, however. PKAN is progressive, and it is relentless.
The OHSU team has created a non-profit foundation, Spoonbill Foundation , to fund their research and a trial of the compound they've developed. We, and other affected families, are determined to raise the $2,000,000 required to get the treatment to trial as soon as possible. We've made a big dent already, and we are now coming together here, as Team Spoonbill, to help raise the rest.
These kids need your help. Our families need hope.
Every dollar counts. If you are able, please give.
And please share. Let's make this campaign trend and save some lives!
Thank you for reading, and thank you for your support.
We are the moms, dads, grandmas, and grandpas of kids battling PKAN. And we are on a mission.
PKAN (pantothenate kinase-associated neurodegeneration) is a rare genetic disorder that robs children of their speech, mobility, motor function and eventually -- often before the age of 10 -- their lives. PKAN is unspeakably cruel. Our kids' cognition and intellect remain intact while PKAN ravages their bodies and systems.
There is no treatment available for PKAN. Yet.
But there is hope.
Although PKAN is incredibly rare (and thus does not receive much attention from researchers and fundraisers), a team of amazing doctors and scientists at Oregon Health & Science University (OHSU) has developed a very promising treatment for PKAN, and is committed to bringing it to market. They are so, so close. Funding is (almost) all that stands between the compound they've developed and human trials. The OHSU team hopes to start human trials of their treatment yet this year. This is incredible news for the children suffering from this cruel disease. The sooner they can get the treatment, the better their chances of survival.
Time is not on the side of these kids, however. PKAN is progressive, and it is relentless.
The OHSU team has created a non-profit foundation, Spoonbill Foundation , to fund their research and a trial of the compound they've developed. We, and other affected families, are determined to raise the $2,000,000 required to get the treatment to trial as soon as possible. We've made a big dent already, and we are now coming together here, as Team Spoonbill, to help raise the rest.
These kids need your help. Our families need hope.
Every dollar counts. If you are able, please give.
And please share. Let's make this campaign trend and save some lives!
Thank you for reading, and thank you for your support.
Fundraising team: Team Spoonbill (8)
Sarah Doerr
Organizer
Portland, OR
The Spoonbill Foundation
Registered nonprofit
Donations are typically 100% tax deductible in the US.
Ashley Miller
Team member
Heather Puglisi-Mastrantonio
Team member
Courtney and
Team member
Frances Pombert
Team member
