On September 25th I’m playing in the 4th biannual NBIA Golf Marathon at the Lake Arthur Country Club, I am going to attempt to play 100 holes of golf in a single day! I am participating because I am dedicated to finding a cure for NBIA—Neurodegeneration with Brain Iron Accumulation diseases.
Our Twenty four year-old Adam Tifone has been diagnosed with NBIA. The disease is progressive and usually results in the loss of all muscle control including the ability to walk, talk and function normally. There is no specific treatment or cure at this time, but with your help, we’ll find one.
You can make a difference by sponsoring me! You can make a one-time flat donation on this site simply by pressing the “Donate Button”. If you would rather send a check in the mail, please click here to print a donation form.
If you would like to make a per hole pledge, please give me a call or send me an email with the amount per hole. You will be contacted after the event to make your donation.
If you would like to golf in the event or be an event sponsor, please visit the event web site at www.nbiagolfmarathon.com.
All of the money I raise will go to support the NBIA Research Grants Program and support services for individuals and families impacted by NBIA. The NBIA Disorders Association has funded 28 grants to qualified researchers since 2002. They have totaled $1,400,000! Many of these grants have led to the discovery of NBIA genes and taken the researchers further down the path to the cure. One experimental drug that Adam has been on for 6 years is part way through a clinicl trail and there are 2 other drugs that may make it to clinical trials with in 2 years. This is all due to the support of individuals like you.
Thank you for helping me reach my personal fundraising goal and for recognizing the important work that the NBIA Disorders Association does each year to support the NBIA community.
Rick & Diane Tifone
P.S. Many thanks for your support -- and don't forget to forward this link to anyone who you think might want to donate too!
NBIA Disorders Association is a 501c3 nonprofit organization. All deductions are tax-deductible to the fullest extent of the law.