Friday September 25, 2015
Lake Arthur Country Club, Butler PA 16001
Help keep the hope for a cure alive

Proceeds benefit NBIA Research

WANTED
BIG HEARTED GOLFERS
 
This is an opportunity to get a hefty fix of Golf before the season ends and at the same time, make a big difference in a lot of people's lives.
 

 

Questions?

Call Rick at 412-492-7495

 

Thank you to our Sponsors
 
Please visit their websites by clicking on their logos  

Dear Friends,

Our son, Adam, was diagnosed with Neurodegeneration with Brain Iron Accumulation (NBIA) in March 2007. NBIA is a rare, genetic, progressive neurological disorder that affects approximately two people per million. The common feature among all individuals with NBIA is iron accumulation in the brain, along with a progressive movement disorder, which can result in clumsiness, difficulty controlling the body and speech problems. Some individuals eventually lose the ability to walk, talk, and become totally dependent on others for all their needs.

We are working hard to raise funds to find treatments and ultimately a cure for NBIA. This December, we hope to fund as many of the 2015 Research grant applications that our Scientific & Medical Advisory Board believe will advance our search for a cure. Because of our past efforts, we have increased the number of researchers interested in working on NBIA - now we have to help them make that research possible. The average grant request is $45,000.

The National Institute for Health (NIH) funding is at an all -time low. It is very difficult for rare diseases like NBIA to get those federal funds. If we are to keep the hope for a cure alive in this climate, it is important that the NBIA Disorders Association take a lead role in helping fund research. We are doing our best to keep and attract new researchers to study NBIA disorders.

You can make a difference by supporting our event. Your support gives Adam and all others with NBIA the gift of HOPE.

Sincerely,
Rick and Diane Tifone

Event Sponsor
Birdie Sponsor
Par Sponsor
Eagle Sponsor
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