Levittown Student Attends Children's Tumor Foundation Family Forum

Submitted by Anita Gribben

Last month Division Ave. high School Junior Bailey Gribben attended the Children's Tumor Foundation annual NF Family Forum and NF medical conference in Washington DC.

This was the largest gathering of NF researchers, experts, and patients ever to come together to share their experiences and knowledge and most importantly the hopeful research that is underway to find treatments and a cure for neurofibromatosis.

On Saturday night Bailey(who is the 2014 CTF Ambassador) was invited to address the crowd of over 650 families,clinicians,scientists and researchers,as a key note speaker.

The other key note speaker was Dr.Collins who is the director of the National Institute of Health (NIH), and the Co discoverer of the NF gene. Bailey got up on stage , calm and poised, to a standing ovation.He truly impressed the crowd when he spoke about having 5 brain surgeries in August and September 2013 instead of starting his Junior year at Division Ave.high School.

In true Bailey fashion he did not want to discuss or dwell on his struggles,as he does not have an ounce of self pity and certainly does not want to elicit it from others. He once again said his favorite quote "sometimes your circumstances suck, but LIFE doesn't".

Instead he wanted to thank the doctors and researchers for their dedication "you are the professionals who have devoted your lives to finding a cure; who have benefited from our relentless fundraising; who you have supported throughout their studies and work. These doctors and researchers are changing lives everyday and I believe that one of you here is going to be the one to discover the cure to stop these NF tumors from growing. We can not thank you enough for your perseverance and courage in pursuing NF research".

He also inspired other NF heroes and families present by saying "To all of the doctors and researchers, these are the lives you are changing each and every day. Every cell you put onto that petri dish; every syringe you fill; every sheet of paperwork you complete, it is for these people to live a happier,healthier life. The ability these NF families possess to be able to balance appointments, jobs, and maintain their positive spirits while still doing phenomenal fundraising work is awe-inspiring and deserves recognition.We all know that NF is unpredictable and our lives will always be interrupted by constant doctor appointments, MRIs, and surgeries. We will visit many neurologists, optomologists, oncologists, radiologists – our parents probably need to visit a psychologist.We know all about tumors such as meningiomas, gliomas, fibromas and plexiforms- that sometimes will rob us of our hearing, vision, limbs, and mobility. But NF will NEVER rob us of our spirit, of our passion to live and enjoy our lives and it will NEVER define who we are. So as all of you amazing doctors and researchers go back to your practices and labs, and as the dedicated hard working staff at CTF goes back to funding NF research, I hope you all won’t all of us who live with NF will just go back to enjoying our lives, working hard in school, traveling the world, and making a difference to spread NF awareness. Hopefully we can inspire others to live life to the fullest, to enjoy every day, and to just have fun with it until the day that there is a cure for NF". After Bailey spoke the Director of the NIH wanted to meet Bailey and shake his hand. Everyone in the room were inspired by his determination and perseverance and his positive outlook on life. In the past 4 years Bailey and his family have raised over $50,000 for Children's Tumor Foundation to help fund research for treatments and a cure for neurofibromatosis.

As well as having 5 brain surgeries and spending 6 weeks at Weill Cornell hospital this junior year at DAHS Bailey also traveled in february to Spain,France,Monaco and Italy with the schools euro trip.He attended Jr.Prom,was honored with a senator Kemp Hannon Youth leadership Award,was accepted into the National Honor society and was voted to be the NHS President.Bailey is also nominated to run for the 2014/15 Homecoming court and has been accepted as a Peer leader. Bailey was accepted to attend a 2 week summer engineering program at Stony Brook University and he also completed his second year in the ACE mentoring engineering program,which he will attend again for his senior year.

As you can see Bailey never let's his medical struggles with NF and diabetes hold him back from following his dreams, no matter how often they keep interrupting his life. To find out more about neurofibromatosis go to www.ctf.org. To make a donation to help Bailey fund research for a cure for NF, click here.