The Spoonbill Foundation

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.

Ten years ago, Lester and Noreen Jessop welcomed a perfect beautiful baby boy named Daron, into this world. Daron brought with him so much love. He appeared to be like every other kid going through all the normal phases of life, learning to crawl, talk, laugh and play. He was his daddy’s sidekick, he loved to ride in the big equipment and played with his toys as if running his own company like daddy. Everything about Daron seemed to be so normal, that it baffled the doctors that he could never learn to walk on his own.

At age four Daron started to regress little by little each day, he lost his balance more easily and wasn’t able to catch himself when he fell anymore. Right after Daron turned 5, in 2013, Lester and Noreen extended the family with a set of twin girls named Angela and Aubrey. During the first year of their life Daron continued to get worse, it was common to see Daron with a bandage on his chin where it had split open from him falling and bruises on his knees from crawling, as that was his only way of getting around.

During 2014 Lester and Noreen became more concerned with the declining health of Daron and the lack of major milestones with the girls. After many, many visits to the ER and by the suggestion of a doctor, Lester and Noreen started having genetic testing done on all three children.

The genetic testing results started to trickle in, but there was no definite news as to why Daron’s health continued to fade and why the girls weren’t progressing. With every result that had no answers more testing was done. Testing this, testing that, hoping for the best. Lester and Noreen were becoming desperate for answers, every month that passed Daron was getting worse. The year he turned eight, when he should have been going to second grade, his muscles were losing mobility taking away his ability to feed himself and eventually the ability to eat.

Finally, after all the desperation Lester and Noreen were given an answer. Unfortunately, the news was a death sentence for all three of their children. The diagnose was Pantothenate kinase-associated neurodegeneration (PKAN).

Once they knew the diagnoses, Noreen started researching everything connected with PKAN and came across a group of doctors in Portland Oregon that have dedicated the past 25 years to researching this disorder and had treatment in the research stage that could potentially stop the progression of the disease. Noreen and Lester immediately set up an appointment to bring Daron, Angela and Aubrey in to see these Doctors.

On January 25th, 2018 at their appointment at OHSU Hospital in Portland, the doctors evaluated the children and took culture samples of their DNA to continue their research. During the visit with Dr. Susan Hayflick and Dr. Penelope Hogarth, Lester and Noreen were told research results had come in, that could change the lives of their children. Not only had they found something that could stop the progression of the disease but could start the healing process, not only for their 3 children but for over 200 more children in the U.S. that are suffering from this disease.

Now we are joining the journey to get this medication to the clinical trial stage. In order for the medication to be made and the trials to take place, the Spoonbill Foundation, headed by Dr. Hayflick and Dr. Hogarth, needs $2 million in donations. So, we ask you to please search your heart and join us in our Give So They Can Live, fundraiser. If you would like to find out more information about PKAN and these wonderful doctors who have dedicated their lives to finding a cure, please visit http://nbiacure.org/learn/nbia-disorders/pkan/ & http://nbiacure.org/spoonbill-foundation

Follow their journey on facebook @givesotheycanlive
www.facebook.com/givesotheycanlive/

I wanted to share with you that our son Levi (age 4) was diagnosed with a rare genetic disorder called PKAN (Pantothenate Kinase-Associated Neurodegeneration).  PKAN is a progressive, degenerative, neurological condition and there is currently no cure or treatment.  The disease is particularly cruel in childhood, when uncontrollable twisting movements can be extreme, causing pain and even bone fractures. Levi’s awareness is not affected, making the suffering imposed by the disease especially poignant for him, and heartbreaking for us.  Without treatment, the disease will eventually rob Levi of his speech, ability to walk, motor function, sight, and – much, much too soon – his life.  

Our hearts are shattered.  Some of you know that Levi has struggled with motor skills and speech his whole life.  After years of visiting various specialists, genetic testing was our last-ditch effort to find the root cause of his challenges.  We did not expect this.  PKAN is ridiculously rare – maybe a couple hundred kids in the US, a thousand or so more around the world.  

While there is currently no treatment for PKAN, there is hope.  A team of amazing doctors and scientists at Oregon Health & Science University is committed to getting a treatment for PKAN to market.  They are so, so close.  Funding is (almost) all that stands between the promising compound they’ve developed and human trials.  The goal is to get this compound into human trials this year.  We are traveling to Portland at the end of March to meet with the team at OHSU and are hopeful that Levi will be selected to participate in the clinical trial.

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 this clinical trial going ASAP.

If you are able, please consider making a donation to Spoonbill Foundation through our Go Fund Me site.

Thank you for reading, and thank you for your concern and support.  It means the world.


Sincerely,

Katie, Jeremy, Aria & Levi