Dear Family and Friends,
Imagine waking up and not be able to walk, talk, or eat. Our 14 year old daughter Brittany faces these challenges every day. To make matters more difficult we are told that there is no treatment or cure. Worse yet, one of the very few labs dedicated to researching her disease is at risk of closing its doors, due to lack of funds. Once the doors close, our hope for a cure is gone.
Hope comes in the form of a dedicated research laboratory focused solely on NBIA. NBIA (Neurodegeneration with Brain Iron Accumulation) is a rare, inherited, neurological movement disorder characterized by the progressive degeneration of the nervous system (neurodegenerative disorder). Just one to three people out of 1 million are believed to be affected.
Dr. Susan Hayflick’s lab at the Oregon Health & Science University was the first one 17 years ago dedicated to finding a cure for this terrible disease. Dr. Hayflick is considered the world expert on NBIA disorders and responsible for finding two genes, in 2001 and 2006. In the next few months, the doors to this lab are in danger of closing if we do not raise enough money to keep them open.
This crisis has occurred because funding from the National Institutes of Health for “extramural” research is at an all-time low. NBIA research is comprised of fewer than 5 investigators with Dr. Hayflick at the helm. Research comes to a halt if we lose Dr. Hayflick and her laboratory. Moreover, the investment needed to rebuild from the ground up will be enormous. This is an especially demoralizing time for investigators, and the impact of lost productivity will be hard to quantify.
When one of the very few laboratories dedicated to researching and understanding the disease your child is affected with must shut its doors, it is truly tragic. Hope is lost for all affected. We need your help.
We are asking for your support. To maintain hope, we must retain this laboratory. To do this, we need to raise $250,000 by the end of this year. This amount will allow the lab to remain functioning for the next two years. This then allows the opportunity for government funding to step back in, via NIH grants.
Help us meet this very ambitious goal. With only a few hundred members of the NBIA Disorders Association, we need everyone who receives this to spread the word. Copy the letter and send it to at least 20 friends and ask them to send it on to 20 others. If we can ask for just $25 from each person receiving this, we can make our goal.
We have to make our goal. It’s our only hope.
Please consider contributing to NBIA Disorders Association for the “Hayflick Lab Campaign.” Your donation (no matter how small) is critical and greatly appreciated.
With sincere gratitude for your consideration.
Rich and Sandy Leap
Please make checks payable to NBIA Disorders Association (memo: “Hayflick Lab Campaign”) and mail to:
NBIA Disorders Association, 14852 Ashby Oak Ct. Haymarket, VA 20169.
You can also donate online at the NBIA Disorders Association Web site at www.NBIAdisorders.org or at the NBIA Disorders Association cause page on Face book at http://apps.facebook.com/causes/NBIA
NBIA Disorders Association is a 501 (c) 3 organization and your contribution is tax deductible.
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