George T. Orfanakos is the president of the Children’s Tumor Foundation, a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).
Having donated to the fund in the past, I received their newsletter; it’d be great for everyone to give a small token of appreciation; to show your support to a loved one who might be sick, or simply because you are aware of how blessed you are to be healthy.
Happy Holidays – it’s the best time to give.
This summer while attending the Children’s Tumor Foundation’s annual NF Forum, I had the pleasure of speaking with an impressive gentleman named Matt Hay. A husband and father, Matt is an active member of our NF Endurance Team and was, at the time, training for an Ironman triathlon. An Ironman includes a 2.4-mile swim, a 112-mile bike ride, and a 26.2-mile run. A monumental effort by any measure, but even more impressive when you consider that Matt is living with neurofibromatosis.
Diagnosed with NF2 in 1998 at age 19, Matt has had two brain surgeries, a spinal surgery, and five eye surgeries in the last decade. He has had to relearn how to walk and hear several times, but as I spoke with Matt, I was overcome with an extraordinary realization. Although his challenges are enormous, his passion to prevail is even greater. This quality, I’ve learned, is embodied by NF families everywhere.
On September 11th of this year, Matt finished his Ironman after 15 hours and 41 minutes of pure drive and determination. He stuck to his plan and accomplished his goal and I’m proud to say, because of people like Matt, WE are on course to do the same. It is because of this determination that we have grown from two to now 50 drugs in early stage testing to treat NF, which compliment our 25 ongoing NF clinical trials.
This progress would not be possible without a proven strategic plan, sincere generosity, and enduring support from the NF community. We are still working to find solutions for all forms of NF, but our partnerships with government and industry will better leverage each and every dollar donated.
I share Matt’s story to inspire you and to emphasize the importance of your support. I realize that the current economic climate is challenging for everyone, but NF won’t wait until things improve. I ask you to consider why you first gave, measure our progress and stewardship, and renew your support with a gift today.
On behalf of the Foundation, the Hay family, and the millions battling NF around the world, I thank you. We are truly grateful for your generosity and consideration.?
Sincerely yours,
George T. Orfanakos
To make your gift online, please go to: ctf.org/giving
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