We Will Never Give Up Hope

Tuesday, September 29, 2015


Hi, my name is Kyle and my friend Landon is 7. He loves to play with his older brother and camp, swim and practice karate. I am 18 and enjoy being outdoors with my friends and family.

Landon and I need your help. He and I share a rare, life-threatening disorder called Fatty Acid Hydroxylase-associated Neurodegeneration, or FAHN.

At present, only a few children have been identified with this form of Neurodegeneration with Brain Iron Accumulation, or NBIA, a group of devastating genetic disorders. FAHN does terrible things to the body. It causes developmental delays, vision loss, painful movements in the legs, weakness, and changes in the brain that lead to seizures and unsteady movements. Unfortunately, FAHN is progressive, often resulting in premature death.

Will you help us?

We are asking you to exercise your heart and give. Proceeds from this campaign will go directly to fund research for FAHN. Dr. Susan Hayflick, professor and chair of molecular and medical genetics at the Oregon Health & Science University is heading up the research. She has been working on NBIA disorders for over 30 years and is the only researcher working on FAHN.  She considers FAHN a solvable disease “Its root cause is known.” she says. “We have many of the essential tools already in hand to reach the goal of a cure. What holds us back is stable funding for this dedicated effort. I am ready to work with you to move this forward”.

That’s Dr. Hayflick, in the photo next to Landon, holding up a sign that says “NEVER GIVE UP.” Landon and I will never give up hope. Your willingness to donate adds to that hope.

Here’s how you can help:

From now to Sept. 30, 2017, you can raise awareness of FAHN so we can fund this potentially life-saving research. It’s easy. Just create a personal WE WILL NEVER GIVE UP HOPE FirstGiving page https://www.firstgiving.com/NBIAdisorders/we-will-never-give-up  and click on the Green Fundraise button at the top of this letter. Share your story and say why the NBIA Disorders Association Research Program means so much to you and your family. Set your own fundraising goal, whether it is $80, $800 or $8,000. Choose any amount and just know: Every dollar makes a difference!

WE WILL NEVER GIVE UP HOPE is a meaningful way for you to reach out to friends, family, co-workers and businesses who want to help but aren’t sure how. And don’t forget to promote your FirstGiving page on Facebook and Twitter.

WE WILL NEVER GIVE UP HOPE is about what works best for you. The faster we do this, the faster the research can begin. So don’t wait to get started. Landon and I are counting on you!

About NBIA Disorders Association: The NBIA Disorders Association is the only patient organization in the United States dedicated to finding a cure for all NBIA disorders. It is a non-profit, 501(c) (3) organization, founded in 1996 as the nation’s leader and expert in advancing awareness and research into these rare disorders. The association collaborates with sister organizations and scientists around the globe. As a registered nonprofit, donations are tax-deductible.