Location: Gunnar Anderson Pavilion Forest Preserve, 719 Batavia Avenue, Geneva, IL 60134 For more information, contact Jen White at jwhite@ctf.org or at 212-344-6633 ext. 8544.
Please register using this LINK.
More information about how Cole connects to this organization, and why it is important that we support it are offered in this letter from his mom and dad:
Dear Friends and Family,
On August 1, 2015, we will be participating in the Chicago NF walk to increase awareness of Neurofibromatosis (NF) and raise money for the Children’s Tumor Foundation. We hope you will join us.
Neurofibromatosis is the most common genetic disorder caused by a single gene. It is a highly variable and progressive disorder. While not all patients suffer from the most severe symptoms, all live their lives with the uncertainty of knowing whether they too will be severely affected. There are different kinds of NF, but Cole has NF1. NF1 can cause tumors to grow on nerves anywhere in the body, and can also cause a lot of other problems like blindness, brain tumors, high blood pressure, headaches, cancer, learning disabilities, and severe chronic pain.
NF has affected Cole in many different ways. Cole suffers from a recurrent aggressive myxoid fibroma, scoliosis, ADD, high blood pressure, headaches, ventricular hypotrophy and tumors among other things. All of these ailments, caused by NF, create daily pain and a host of other problems that require constant oversight. Cole makes monthly visits to numerous doctors and has had more MRIs and CT Scans than any child should ever endure.
Cole is now 16 years old and has been dealing with the effects of Neurofibromatosis since he was born. Neurofibromatosis (NF) has become Cole’s way of life since he was diagnosed at the age of 18 months. Each year he faces challenges that no child should ever face, but he keeps plugging away.
There is no cure for NF. There are no effective treatments. Not yet! But the Children’s Tumor Foundation has created a number of innovative programs that are already speeding up the drug research and development process. They are actively driving clinical trials and are bringing together top scientists to work collaboratively to solve the mysteries of NF. It is giving renewed hope to the millions of people worldwide who are living with NF.
Although Cole does not like having NF, it doesn’t stop him from doing some things he really enjoys. This year Cole participated in cross country and baseball at the high school level, and although he doesn’t excel, he enjoys the camaraderie it brings! To see Cole reach the finish line in cross country and collect a base hit in baseball shows the desire he has to succeed. He also informs us that staying active in sports prevents him from going to therapy three days a week!
To honor Cole and others affected by NF, we will be hosting our annual Children’s Tumor Foundation 5K/Run Walk 2015 on August 1st. The event takes place at the Gunnar Anderson Forest Preserve along the Fox River in Geneva. This event is a fundraising effort to raise money to someday find a cure. At this moment in time, there is no cure for NF! Please consider joining us to celebrate the efforts of Cole in his crusade to find a cure and live a normal life.
To register, PLEASE JOIN Cole’s Crew. If you are unable to make the event, your donations will be greatly appreciated and can be mailed to Children’s Tumor Foundation, Attn: NF Walk, 120 Wall Street, 16th Floor, New York, NY 10005. Be sure to include in the memo area “In Honor of Cole Rutter – Chicago NF Walk.”
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