Gearing Up for Daytona & Racing4Research: Why we volunteer.

The Children’s Tumor Foundation (CTF) Racing4Research (R4R) program will return with Park Place Motorsports in full flying colors this season as the team’s No. 73 Park Place Motorsports Porsche GT America will display a bright and vibrant paint scheme inspired by a signature piece of work from highly-acclaimed young artist and NF Hero Jeffrey Owen Hanson.

Each year, for the past four, our family has participated in the Children's Tumor Foundation's Racing4Research national program. What that means is that we register Jesse as an NF hero on the website and set up a personal donation page.  Then we put our creative thinking caps on and find ways to raise money for research. Every donation made and dollar earned, from the fundraisers that we organize, contributes to helping us meet our annual goals.  We work hard at this, all year long, knowing that what we raise will have a significant impact on our son's future. It also means that we get to celebrate our successes, along with our NF family of warriors, at the program's culmination event: The Rolex 24 at Daytona.

Fundraising for a cure is a passion. When your child's future hangs in the balance, it is only natural to seek out the mechanism by which you can put the odds in his favor. Children's Tumor Foundation is that vehicle and with a 4-star rating on Charity Navigator, the highest possible rating, I know that we are working with the foundation that will find the cure.

I connected with Children's Tumor Foundation in 1997, when it was still called National Neurofibromatosis Foundation (NNFF). The neurologist who diagnosed my then, 6 month old, baby boy gave me the sage advice of refraining from searching NF on the internet.  He told me that I would be horrified by what I would find and that if I wanted reading materials, he would provide them.  Of course, I did not want to be horrified by anything in relation to my infant son. I was still post natal and breast feeding (ie. hormonally emotional; a sleep deprived mess) and reeling from the diagnosis itself.  He mailed us a very large packet of materials, which I tucked in a drawer and did not even unseal for at least 6 more months.  I wanted to enjoy my baby and give him my best self, not a stressed-out-what-if-filled version of me.  It wasn't until Jesse was consistently delayed in meeting his milestones: sleeping, sitting, crawling, walking and talking, that I tentatively opened the package.  

It was in this package that I found a brochure from NNFF. That was when I finally went to the computer. I poured over the website (I can still picture it perfectly in my mind) and eventually found the bulletin board where I was able to compare notes, read stories and ask questions of other NF parents, because at this point, I had never met one face to face.  Over the years, there were times when it was a comfort to be connected and informed and there were times when it overwhelmed me and I kept my distance.  I tended to gravitate back there whenever something new would come up.  I had already had two other, healthy children, so I knew what was "normal" and what was not, for the most part.  Anytime I needed to check something out, I went to the NNFF-BB.  This was my first experience with making NF family connections.  At the time, there were no organized events in our area (Western New York), but I often thought about finding ways to participate.

When Jesse was 2, I held my first fundraiser; a virtual tea party, with all of the proceeds going to the foundation.  Whenever a family celebration came up, we would ask for donations in lieu of gifts. In the meantime, we continued to raise our son; focusing on the educational and developmental aspects of his disorder, which just happened to be his Daddy's area of expertise (Peter is a board certified neuropsychologist). When Jesse was 7 years old, a plexiform tumor began to grow in his right ankle and he was having recurring headaches and blurred vision.  He had never had an MRI up to this point and we began to have concerns about where other tumors might be growing in his small body.  We researched NF clinics that would be closest to us (Rochester had a major medical center, but no NF specialists at this point) and decided on the Cleveland Clinic in Ohio; a five hour car ride in good weather. It was at the Cleveland Clinic that we met the very first of our NF family live and in person.  Her name was Sarah and she had been through so much more than Jesse had in her 4 years of life. She had a prosthetic eye, had been through chemo treatments and many other horrors.  It has a way of putting things into perspective. 

That being said, the first MRI was ordered, tumors were found and still we were devastated. Our little boy had thickening of the left optic nerve and chasm and small tumors all down his spine in addition to the plexiform tumor in his ankle. This meant that he would need regular follow-up MRIs, which required sedation because they lasted from 4-6 hours each (head, spine, leg with and without contrast). Following each MRI, he spent several hours vomiting and thrashing. He had to go through this again after 3 months, then twice a year for two years.  To date, the MRIs have been mostly stable and the tumors have not required treatment. We are very grateful for that. Once the MRIs slowed down, it was determined that the leg with the tumor was growing progressively faster than the other one and the xrays and surgical consults started up!

Putting a young child through procedures like these, in addition to having him sit in a car 5 hours each way just to see his neurologist in another city, require the regular services of  a neuro-ophthalmologist, orthopedic specialist, neuropsychologist and endocrinoligist (as well as many other specialists who ruled things out on a one time basis),  all while watching his daily struggles with learning, PT, OT, SLT, socialization and anxiety, has a way of fueling a person's fire to help the researchers get the money they need to find a cure. [catches breath] As the new Children's Tumor Foundation President, Annette Bakker says, "It puts fire in your belly."

Our first Rochester NF Walk in 2011

To date, I have organized three walks in Rochester, NY, after beginning a chapter there, which have raised close to $70,000. Our family has held a Bowling4Research event, a Charity Garage Sale and held raffles.  A Dining4Research event was organized by Jesse's Auntie Danielle in Florida and many friends and family have donated on Jesse's behalf.  We have participated in/or have been represented at events in New York, Florida, Washington state and Virginia and have attended NF Family Forum in four cities.  

NF Family Forum 2012~New Orleans (Jesse was a speaker at this dinner of over 500 ppl)

Peter and I will volunteer at the Cupid's Undie Run in DC next month-our first! We have also done several news stories on television and in the papers in our attempts to educate others.  You can see some of them on Youtube. 

I don't know the exact figure of how much money we have raised, but I do know that every dollar counts. With our move to Virginia this year, our fundraising did not really get off the ground as we had hoped, but we are planning a motorcycle ride event (Riding4Research) for the Spring and  will do whatever else comes our way.  We have the fire in our bellies and we won't stop doing whatever we can do to raise awareness (including getting tattoos) and funds so that our son can hope for a better future. We stay dedicated to this path because, in the words of Michelle Lampman, mother to Ryan, also with NF1, and my successor in Western NY:

"He will have it [NF] forever. We will be battling tumors forever."

In ten days, we will drive to Daytona, FL to meet up with two Grandpas, a Nana and many of our NF family members to participate in the Racing4Research 2014 culminating event: The Rolex 24 at Daytona.  This year, we will be paying our own way, but even though he recently claimed that it's not true (to try to alleviate the financial pressure on us to go), this is Jesse's favorite event of all.  I won't lie, it's Peter's and my favorite as well!  At this event, we will rub elbows with the driving team of the No. 73 (Park Place Motors and Children's Tumor Foundation) Porsche GT. Jesse, along with all of the other NF heroes, will sign the car and take photos with the team and then we will cheer them on as they race through the night to bring us our first podium finish! My next blog entry will share our experience with you.

After the Rochester NF Walk 2013, I posted something on Facebook that I think does a good job of summing up our motivation for being involved in Children's Tumor Foundation and Racing4Research. It is worth repeating:

Connie Brisson Sorman

October 1, 2013

Whenever I have opportunities to bring people within the NF community together, I always get a feeling of accomplishment. I am happy knowing that my son is growing up knowing that his burden is not his alone and that he has a whole community of amazing people around him who share his struggles. — feeling blessed.

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