I am asking for a little help from my readers. On September 26 2009 my family and I are walking to raise funds for the Children’s Tumor Foundation. Please consider a small donation to support the wonderful work of the leading group that provides support and services to those affected by Neurofibromatosis. Neurofibromatosis is a neurological disorder that causes tumors to grow on nerves. There are many other manifestations of this disorder, far too many to list here.

My children, Ashley and Matthew have Neurofibromatosis Type 1, something they inherited from me. Our team, Full of Hope is walking to raise money for the Children’s Tumor Foundation which provides critical support services and funds research to find treatments and a cure for Neurofibromatosis (NF). Please visit our donation page for the Walk for the Children’s Tumor Foundation.

This is the second year for this event. Last year, the Children’s Tumor Foundation Staten Island Walk was an inspiring moment for me and my family. Emotions were strong as we walked. Though it was cool and the skies were grey with the threat of rain, our spirits were high. Each step renewed our hope that there will, one day, be a cure. Hundreds walking each step a step closer to a cure. Children racing to the finish line filled with pride knowing that they can help find a cure. Children and adults empowered and encouraged; filled with hope.

Last year as I watched my children walk and then at the end proudly display their medals I truly was filled with hope. As a mom of children who have NF, I know that there is uncertainty; tumors and other complications are a fact of life. Even though my children have so far had few complications I worry about their future. This disorder is progressive and variable. We really do not know what the future holds, and how far it will progress. I have seen the heartbreak experienced by the thousands of moms and dad whose children have experienced severe complications. 

Every donation, no matter what size aids research and makes critical support services available to the thousands of children and adults affected by Neurofibromatosis. Every donation, every step means parents can find knowledgeable doctors for their children. Before getting the referrals provided by the Children’s Tumor Foundation it was hard finding doctors that knew more than me about NF. I will always remember having to spell and explain Neurofibromatosis to one of my children’s doctors. The Children’s Tumor Foundation means I can sleep a little better at night, knowing my children will always be able to find quality care and, one day even a cure.

Every dollar and every step brings us closer to a cure.

Thank you for helping and keeping us Full of Hope.

The first thing my children did when I told them I was going to walk was empty their piggy banks and sponsor me. Then my children asked to walk as well so we formed a team. They have set a goal to raise $2,000 for our team which we call “Full of Hope”. If you could please sponsor our team or even join our team. My children are hoping to see a cure for NF. I am proud that as young as they are they approach this with such a proactive, mature and positive outlook.

It is not easy to live with the uncertainty of NF, I know, I have it too. What is even harder though, is your children having NF. The funds we raise will go towards research for a cure and support for children and families affected by NF.

The walk is on Oct 4, on Staten Island, NY. This is the day before the NYC Affiliate Summit so if you are in town you can join us. If you’d like to join us let me know, we’d be honored to have you join our team and walk. It is only 5K and everyone is welcome, adults and children.

If you can, please sponsor us at http://ctf.org/walk/donate.html After entering donation amount – For box “My donation is given” select Support a Team from drop down then in “Enter recognition Name” type in Full of Hope.