MEET AN NF HERO: Kaleb Kaleb is nine years old and was diagnosed with NF at the age of ten months. Kaleb has a brain tumor but with the help of chemotherapy it has shrunk and is stable. He loves to play video games and watch Oklahoma University games with his dad. He is also a talented athlete and was chosen for the “select group” on his baseball team where he plays pitcher. His grandmother, Lisa Siebert, says, “I love watching him play. He is such a tough kid. He played baseball even when he was undergoing chemo. He has had two surgeries on his ankle due to the curve in his leg and will have at least one more, but that has never slowed him down. He is an inspiration
STORIES OF NF
If you could have any superpower, what would it be? To pitch fast
to so many and he is my rock and my hero.” FIVE QUESTIONS FOR KALEB:
What was the last movie you saw? “Teenage Mutant Ninja Turtles”
What is your idea of the perfect day? Playing baseball with my friends What is your favorite breakfast food? Biscuits What sound or noise do you love? Music
Chakriwat Vivacharawongse
My name is Chakriwat Vivacharawongse, I am 31 years old, and I live with neurofibromatosis type 2 (NF2). To date, I have had ten open tissue surgeries and a handful of radiotherapies (Gamma Knife, Cyber Knife) to remove or cut blood supply to the benign tumors that were impeding important structures in my central nervous system. Although it is true that NF has given me both physical and emotional hardships, I firmly believe that I would not be the person I am today if I was not born with this disorder. Being so afflicted (or blessed), I found my passion in medicine. I graduated from the University of Miami in 2006 with a BA in Psychology and Biology and went on to graduate from medical school in 2013 and accomplish my dream of becoming a doctor. As you can imagine, I have had to overcome various physical and emotional challenges to reach this point in my career. It was both frustrating and draining to have to put my educational goals aside as I received treatments. I have had to employ various coping mechanisms to keep me motivated. The bottom line is that through good rapport with your physician, regular MRI scans, utilizing today’s technology, and most importantly, cultivating good coping skills, I believe a person with NF can accomplish anything their heart desires.
WHY I ATTEND THE NF FORUM Erin Powers I attend Forum because I have NF2, and am greatly affected. I have been very involved with the Foundation and feel like the Forum is a great opportunity to meet people who are also affected by this disease, and find out how I can best contribute to help end NF. The Forum gives me an opportunity to learn more about my disease, new treatments that have been found, and how best to cope with having NF2. To register for the NF Forum go to www.ctf.org/nfforum
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