Special Needs

Dr. Singer used the 3M LAVA C.O.S (Chair side Oral Scanner) to take a digital impression of Brittany's lower and upper jaws. Brittany has Neurodegeneration with Brain Iron Accumulation or NBIA. NBIA is so rare, in fact that it affects only one in one million people. It involves the collection of iron in the basal ganglia of the brain resulting in a degenerative process in which patients lose control over their muscles. Symptoms include slow writhing, distorting muscle contraction of the limbs, face, or trunk, involuntary jerky muscle movement, muscle rigidity among other symptoms. Due to Brittany's condition, she is unable to receive oral healthcare in a traditional setting. Brittany's chief complaint to us was her inability to control her oral movements causing her to bite her cheeks and tongue. To alleviate Brittany's discomfort and pain we were able to take a digital impression in the operating room at GW. This impression will be used to fabricate intraoral appliances to relieve Brittany of biting down on her tongue and cheeks.

While Dr. Singer and 3M did not have patients like Brittany in mind when they developed and acquired this technology, they are thrilled to have been able to find new and innovative ways to help people.

"Dr. Singer in the operating room at George Washington University Hospital treating Brittany"

Dear Friends,

This letter is to ask for your help.

Brittany Leap was diagnosed with NBIA (Neuro-degeneration with Brain Iron Accumulation) three and a half years ago. 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. Since then we have been concentrating on raising awareness and funds for research. This year we face a new challenge. The only laboratory dedicated to researching NBIA is in danger of closing by the end of the year. If that happens, hope for a cure is gone.

(Click here to read more about Brittany Leap and the laboratory. It explains the urgent need.)

NBIA as an association is running a letter campaign to help raise funds. We usually have one or two events a year. This year we have four, which is why we have been having trouble figuring out how to ask people for so much, especially with the state of the economy.

We desperately need your support, but we do not want to burden everyone each time we have an event. What we have decided to do is let you know what events are planned for the year and let you decide which event you might like to participate in or support with a small donation.

Following are the events:

• Letter campaign - letter is attached and it is off and running as of Sat. July 18. Please
• Golf Marathon - Oct 12, 2009 - If you like to golf or would like to be a sponsor or make a donation for this event, please log on to www.queenbeeworld.com for more information and to access the events.
• Cruise and Casino Night - Nov.14 - Hosted by Piedmont Ladies' Nine Golf Association with the help of Tranquility Day Spa and Salon- More info. to follow.
• October - November. Our friend Colleen Corrado will run a "Marathon Triple Crown for the Queen Bee!" (like the Triple Crown in horse racing!). Colleen will run - but you could win a great prize! More info. to follow

Again, we do not want to burden anyone, so if you are not able to support any of these events, we understand. What we ask is that you forward this information and call for help to as many people as you can. Every donation is critical and will add up to what we need to save our laboratory. All money raised by our fundraisers will go to keeping the laboratory open. When we reach the amount needed to keep the lab open, the remainder will go to NBIA Disorders Association to continue our fight for a cure.

Your support will continue to give hope to all of our NBIA family.

With sincere appreciation for your support,

Rich and Sandy Leap

NBIA Disorders Association is a 501 (c)3 organization and your contribution is tax deductible.

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 Facebook at http://apps.facebook.com/causes/NBIA

Dear 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.

To learn more about Brittany, log on to www.queenbeeworld.com. To learn more about NBIA, log on to www.NBIAdisorders.org.

With sincere gratitude for your consideration.

Rich and Sandy Leap

Please make checks payable to NBIA Disorders Association (memo: "Haylick 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.