Middle school student initiates fundraiser to support NF research
by Susan O’Neill
SUGAR GROVE—When people meet 13-year-old Sugar Grove resident and Harter Middle School seventh-grader Cole Rutter, they see a boy with a big smile, an avid baseball player and a young man with a zest for life. What is not so visibly apparent are his physical challenges, including scoliosis, severely high blood pressure, headaches, seizures, a narrowing of the arteries to his kidneys, a tumor on his optic nerve and more—all symptoms of a disease Cole has lived with since he was 18 months old: neurofibromatosis.
Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow throughout the nervous system. Although not all NF patients suffer from the most severe symptoms—such as learning disabilities, blindness, deafness, bone abnormalities, and brain and spinal tumors—all live with that possibility. NF is a progressive disease that currently offers no cure or effective treatment.
That is something that Cole and his family would like to change, and they are doing everything in their power to raise money for the research that may someday help Cole and the more than 100,000 Americans living with NF.
Their current effort is an Illinois Casino Night, a fundraiser for the Children’s Tumor Foundation that will take place on Saturday, Nov. 5, at the Aurora Country Club. The money raised through this event will go to support medical research through the foundation, the leading not-for-profit organization dedicated to finding a cure for NF. This four-star charity raised $4.5 million last year.
Cole decided he wanted to hold a casino night after he and his family visited a family in New Jersey whose son also has NF. The family held a casino night while Cole and his family were there. Cole thought it was great fun and asked his parents if they could replicate the event here. Cole’s family is holding the event in conjunction with a boy from Sycamore who also has NF, and his family.
The $100 ticket price will include an open bar, hors d’oeuvres and a dessert bar. Individuals 21 years of age and over will be able to play roulette, black jack, craps and poker, and raffles and a silent auction will offer additional opportunities to win while supporting the cause.
“We think it’s going to be a great event,” said Julie Rutter, Cole’s mom. “It’s a nice outing. People will have fun and they can help a good cause.”
Rutter said they are seeking sponsors and donations for the raffles and silent auction, as well as guests.
“I would like to raise $50,000; that’s our goal,” she said. “Together, we can find a cure for neurofibromatosis.”
Rutter, who is the Illinois Chapter representative for the Children’s Tumor Foundation, said she strongly believes in research for the disease. In the past several years, Julie and her husband Dan have developed an effective network of clinics that provide medical care to people with NF, and that have funded research that has led to the discovery of the NF1 and NF2 genes.
The last vacation the family took was to Nashville, so that Cole could participate in a research study. Children with NF often have learning disabilities and learn differently, and the purpose of this research was an attempt to determine the best method to teach them.
Although the family did visit the Hard Rock Cafe and the Grand Ol’ Opry, Cole also received 25 hours of one-on-one tutoring as well as MRIs and other tests at Vanderbilt University.
According to Rutter, the Children’s Tumor Foundation began a drug initiative in 2006 to study various drugs and how they might help patients with NF. This year, there are potentially 50 drugs that could go to trial, and the cost to bring one drug to trial is $25,000.
“You never know whose dollar is going to be the one that will find a cure,” she said. “Families with someone with NF live with a lot of uncertainty. This gives us hope that we can help in finding a cure.”
Illinois Casino Night
Benefitting the Children’s Tumor Foundation
Saturday, Nov. 5, 2011
Doors open at 7 p.m.
Aurora Country Club
1548 Prairie Street
$100 ticket price
includes open bar, heavy
hors d’oeuvres, dessert bar
Raffle and silent auction
Roulette, Black Jack, Craps
(must be 21 or older)
Register at www.ctf.org/Illinois
Sponsors and raffle item
donations are needed by Oct. 5
RSVP for the event by Oct. 28
Contact Julie Rutter
with questions at
or (630) 347-5118
Cole’s mom and Cole
(depending on his schedule),
will be on the Fox Valley Today and
on WSPY FM 107.1 on
Tuesday, Oct. 11.
The TV program plays live at
8:30 a.m. and is taped and played
again at 6:30 and 10:30 p.m.,
right after the 6 and 10 p.m.
The Community Forum radio
airs live at 9:05 a.m.