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Hi all. I am reaching out to share what we are doing to support my son. Hope you can help if you choose.
The Children’s Tumor Foundation will be holding the Central Jersey NF Walk on Sunday, October 14, 2012. Taking place in Holmdel Park, the walk will benefit children with neurofibromatosis (NF) by raising awareness and funds. PCG Digital Marketing, an Internet marketing agency in New Jersey, is proud to sponsor a team and participate in the walk.
Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow anywhere on or in the body. NF is one of the most common genetic disorders, affecting 1 in 3000 kids. There are many possible side effects to NF including bone abnormalities, learning disabilities, blindness, tumors, deafness and cancer.
The Children’s Tumor Foundation (CTF) is dedicated to improving the health and well-being of individuals and families affected by NF. Their mission is to advance research to develop treatments and cures for NF, offer patient and family support and create more awareness of NF.
Team Pasch, proudly supported by PCG Digital Marketing, will walk in honor of COO Glenn Pasch’s son Alex Pasch, who was diagnosed with NF when he was just six months old. After multiple doctors’ visits and MRIs, it was discovered when Alex was only 2 1/2 years old that he has two brain tumors.
“Of course, my wife and I were devastated, but the people at CTF (Children’s Tumor Foundation) connected us with other families that were going through similar situations as well as doctors at the Children’s Hospital of Philadelphia (CHOP)” said Glenn. ” We would have felt completely lost and helpless without the support of CTF.”
In May 2010 at the age of 3, Alex started a daunting 15 months of chemotherapy at CHOP, underwent 2 brain surgeries and 2 chest surgeries to implant and remove a port device used during the chemo treatments. The treatment was successful and his tumors are, for the moment, stable. He is now an active, happy 5 year old who just started Kindergarten this September. But the family lives with the constant dread that further NF complications will arise.
“We’re thrilled that Alex now has an active, normal childhood. Although we struggle with other obstacles like low muscle tone and the side-effects of chemo, we know how lucky we are to have him with us and we are grateful everyday that we get to watch both our boys grow up together. We are huge supporters of CTF and welcome any opportunity to give back to this amazing organization that has given us so much,” explains Glenn. “My wife calls CTF her life line. Every family dealing with the chronic illness of a child needs one. Thanks to CTF, we do not have to walk this path alone. We encourage everyone to come out for this worthwhile cause and spend the day with some pretty remarkable people. Come meet our heroes.”
Thankfully, the research that is made possible from these walks and other events are helping to shine light on effective treatments for those struggling with NF.
To donate on behalf of Team Pasch, click here.
Many families and locals are expected to walk through Holmdel Park on the morning of October 14. Donations and money raised will be given to help children who are fighting this debilitating disorder. The Children’s Tumor Foundation will take the money that is donated and use it for medical research, patient support and public education programs.
Not only will there be supporters in the walk, there will also be enthusiasts running in a 5K as well as families participating in a “stroller derby.” Throughout the day, refreshments will be available and kids will have access to their own races and other fun activities.
If you’ll be walking in the Central Jersey NF walk with PCG Digital Marketing and want to tell all of your friends, join the Facebook event.