domingo rogers: Capturing Life in the Fullest

Helping People That Suffer From NBIA

There are some things I could care less about and there are many things I care deeply about.  One thing I am passionate about is summarized in the letter that I have attached below from one of my co-workers.  Please read and consider the difference you could make for Kevin and individuals like him that suffer from NBIA (Neurodegeneration with Brain Iron Accumulation).

Dear friends,

Imagine waking up and not being able to walk, talk, or eat. Our 11 year old son Kevin faces these challenges

Left to right: Wanda Fox with her son Kevin

Left to right: Wanda Fox with her son Kevin

every day. Currently there is no treatment or cure for the disease that causes his debilitating and often painful symptoms. Making matters more difficult, we are now told that one of the very few labs dedicated 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 17 year-old lab at the Oregon Health & Science University was the first one 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, this lab is in danger of closing if we do not raise enough money to keep it 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.

Two years ago, Dr. Hayflick and her colleagues aided Kevin’s team of doctors at UNC Hospital in developing an experimental course of treatment that proved to be life-saving for him.  We cannot imagine what life would be like today without their expertise and commitment to this rare disease population.  When one of the very few laboratories dedicated to researching and understanding your child’s disease must close, 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 continue 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 this letter and send it to everyone you know!  And ask them all to send it to everyone they know!  Please give as much as you can so that we can reach our goal.

We have to reach 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. We believe in miracles; please help us make one happen!

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.

Donate online at https://www.NBIAdisorders.org and learn more about NBIA

Or at the NBIA cause page on Facebook at http://apps.facebook.com/causes/NBIA

You can visit Kevin on Facebook at http://www.facebook.com/kevinfox.fox

With sincere gratitude for your consideration,

The Fox Family – Michael, Wanda, Madeline, Kevin and Kate

In closing, my colleague Michael Fox, his wife Wanda, and their son Kevin will be on the 6:00pm WTVD Channel 11 News on Friday (8/7).  Please watch the news program and again click on the links above to see how you can make a difference.

(For those of you not in the Raleigh/Durham area, I will post a link to the news segment as soon as it is made available)

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