NBIA - Request for help

Discussion in 'Other Off Topic Forum' started by ylshih, Jul 28, 2009.

  1. ylshih

    ylshih Global Moderator
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    Mar 21, 2004
    Northern CA
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    #1 ylshih, Jul 28, 2009
    Last edited: Jul 28, 2009
    I have a friend whose son, Brent, has been diagnosed with NBIA (Neurodegeneration with Brain Iron Accumulation) since he was a young child (he's now 16). This is a neurodegenerative disease that affects 1-3 per million. Given the low incidence, there isn't a lot of attention paid to this disease either in the press or by researchers. This disease has one full-time research lab dedicated to finding a cure and this one lab is in danger of closing. Given the all or nothing nature of this situation, I am forwarding his request for help to try and get the lab enough donations to help it ride through this downturn. Unlike many situations where your help might be a drop in the bucket, this is a situation where a donation can make a huge difference.

    Thanks for your consideration.


    Dear Friends,

    Imagine suddenly being told that your child, who always seemed healthy, would loose his ability to ride a bike, walk, use his hands, talk, or eat. That he would have a 50% chance of going blind and would suffer from uncontrollable painful spasms. Imagine being told that each day would be worst than the day before and that there is nothing that you can do but to “take pictures” because there is no treatment or cure.

    Our 16 year old son Brent faces this reality. To make matters more difficult we are told that worse yet, the one lab dedicated full time to researching his 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. Her lab has been primarily responsible for the finding of 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. NBIA Disorders Association has created the “Hayflick Lab Campaign” to prevent this disaster.

    This crisis has occurred because funding from the National Institutes of Health for “extramural” research is at an all-time low. Biomedical research labs around the country are closing. These losses will have little measurable impact on investigator communities in cancer, hypertension, diabetes, etc. But for many rare disorders, the entire research community is comprised of only one or two investigators. If they are lost, research comes to a halt. 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. NBIA Disorders Association is a 501(c) (3) Charitable Organization; all donations are tax deductible.

    To learn more about NBIA, log on to You can check out Brent’s picture with the Indians mascot at the ballgame this past May.

    With sincere gratitude for your consideration.

    Please make checks payable to NBIA Disorders Association (memo: “Haylick Lab Campaign”) and mail to:

    NBIA Disorders Association, 2082 Monaco Ct., El Cajon, CA 92019-4235.

    You can also donate online at the NBIA Disorders Association Web site at or at the NBIA Disorders Association cause page on Facebook at
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