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Questions?
Contact Rick Tifone at 412-492-7495
Thank you to our Sponsors!
Please visit their websites by clicking on their logos.
WANTED BIG-HEARTED GOLFERS!
Friday, September 28, 2018
8:30 AM EDT
Registration 8:00 a.m.
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.
My 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 and talk and become totally dependent on others for all their needs.
We are working hard to raise funds to support a clinical trial of a compound that may cure Adam's form of NBIA called PKAN. The compound was created by a non-profit organization started by Dr. Susan Hayflick. She is doing this without a drug company so that all NBIA families will be able to afford this treatment. The cost of the clinical trial is approximately $2,000,000. The goal is to start the trial before the end of 2018. For those of us with kids affected by this progressing disorder, the trial cannot start soon enough.
You can make a difference by supporting our event, giving Adam and all the others with NBIA the gift of HOPE.
Sincerely,
Rick Tifone
You don't need to be a good golfer, just be able to swing a club.
Lake Arthur Golf Club
255 Isle Road
Butler, PA 16001
How can I be involved?
Lots of prizes for:
About the Marathon
Do I have to play 100 holes? No. Play as many as you want. After lunch, we will have a wide variety of beer available so if you get tired of golfing you can enjoy the fall afternoon and watch us diehards go buzzing round the course. If you plan on playing only a round or two, please focus on flat pledges or donations instead of per hole pledges.
Do I have to be a good golfer? No! However, you do need to be able to swing the club. A little stamina will go further in this event than pure talent.
How is the Marathon run? Registration begins at 8:00 a.m. with a continental breakfast. (Lunch, Dinner and On-Course drinks all day are included.) You will be paired with one other person (of your choice). Each golfer has their own private golf cart. 8:30 a.m. shotgun start and off you go! Special rules are in effect to speed play along such as playing three balls on all par 3 holes.
How am I going to raise $1,250 in pledges? You can do it! Just take 10 minutes and send out an email to your network with a link to your page. At our last event we averaged more than $2,000 per golfer. There is a template here ready for you to use to email to friends and contacts, and to share on Facebook.
Do I have to collect the money? If you use the fundraising template here to collect the contributions, the system does the collections for you. This is the easiest for you and your donors. If you want to get per-hole pledges, we can contact your donors after the marathon to collect and to let them know how well you did and say thanks for helping Adam and all the people with NBIA.
If I don't raise $1,250 can I still play? Yes! The goal is at least $1,250 in sponsorships/donors. We ask that you do your very best in getting as many givers as possible.
Can a donor pay offline with a check? Absolutely. Just mail the checks payable to NBIA Disorders Assoc. to me at 4791 Au Sable Dr., Gibsonia, PA 15044 or bring them to the event and we will update your page to give you credit. If you are sponsoring a golfer, please put their name in the memo line.
Can I register as a caddy? Yes, if you have a golfer that you would enjoy spending the day buzzing around the course with you can register as a caddy. A caddy must sponsor themselves for a minimum of $75 with a goal of $500 in pledges/donors.
Can I be a Virtual Golfer? Yes. If you would like to help cure NBIA but don't want to golf, you can do so by becoming a Virtual Golfer. You can set up your own giving page where you can tell your story and attract donations from your network. You will also receive an official tee shirt and are invited to join us for dinner. We ask that you make a donation of $100+ and commit to securing $1,000+. We make it easy by offering you a way to share and secure donations.
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Keep the Hope Alive NBIA Golf Marathon 2018
Friday, September 28, 2018
Lake Arthur Golf Club
255 Isle Road Butler, PA
Keep the Hope Alive NBIA Golf Marathon 2018
Friday, September 28, 2018
Lake Arthur Golf Club
255 Isle Road Butler, PA