The Children’s Tumor Foundation–“Philadelphia/South Jersey region will be holding its 3rd Annual Bowling~4~Bumps fundraiser on Sunday October 21, 2012 from 5pm-7pm at Westbrook Lanes Family Bowling Center in Brooklawn, NJ. This year, our event is going to be HALLOWEEN THEMED! So, please come wearing your COSTUMES! We will also be having a basket auction, bake sale, other raffles and much more! For $100/per lane, $20/per person (children 5 and under are FREE) you will get 2hrs of bowling, shoe rental, plus pizza and soda! Proceeds from this event will fund critical research to help find effective treatments and one day, a cure for neurofibromatosis (NF). NF is a genetic disorder that occurs in 1 in 3000 births each year. It causes tumors to grow along the nerves anywhere in the body. It can lead to blindness, deafness, chronic pain, loss of limbs and severe disfigurement. In most cases, NF is diagnosed in early childhood.
The event Bowling~4~Bumps is held on behalf of two local ladies who both suffer from Neurofibromatosis (NF1).. GRACE(8)--Since last year, Grace had to have a cranial bypass done in March to try to stop her TIA’s (mini strokes). They continued to the point that the doctors decided to move up doing the same surgery on the other side from a year out to August 2011. August 2011-December 2011, Grace had the TIA's, but they gradually started to subside. Between the two brain surgeries as well as the medication adjustments, she hasn’t had any mini strokes since Christmas morning (knock on wood). We just had an MRI in late May to check for tumor regrowth and there wasn’t any though there was evidence of a spot of hemorrhage in her brain. They feel it occurred between the October MRI and the last TIA on Christmas, so they made more medication adjustments; so far so good. This is our longest period of stability in a long time. Siobhan(27) - in the last year, Siobhan has had a lot of ups and downs with her NF; it has and is continuing to progress so Siobhan had to have a battery of tests done to check for tumors on her kidneys, adrenal glands and elsewhere in the area----thankfully it was all clear. Now, she is beginning to have trouble walking, standing, and getting up. She can't sit, lay or stand for more than 1/2 hr. at a time because of the spinal pain. August 2012, she had a MRI of her Cervical, Thoracic and Lumbar spine. The results showed a tumor on her C2 vertebrae and two nodules; one near her thyroid and also her lung. There still may be tumors in Siobhan’s lower back; but no one will write her a test order to get another MRI done because DRs feel it is unnecessary. Siobhan’s eyes were checked in December 2011; there was no change in her eyesight except now she has a massive amount of eye floaters that are undetermined if they are "normal" or caused by massive eye strain due to being legally blind in her left eye since birth. Since the last B4B, Siobhan has had surgery number 29 to remove two neurofibromas off of her left shoulder.
The Children’s Tumor Foundation, through its fundraising events, grassroots outreach, public awareness programs and patient support networks, strives to find treatments and ultimately, a cure for NF. The Children’s Tumor Foundation is a 501c (3) [tax id# 13-2298956] not-for profit organization dedicated to improving the health and well-being of the more than 100,000 individuals in this country alone who have NF. The work of the Foundation is supported by tax deductible contributions in accordance with IRS regulations made by individuals, companies and organizations.