One in every 3000 children in the United States is afflicted with neurofibromatosis (NF), a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. The Children’s Tumor Foundation and Racing4Research have teamed with Pirelli to raise money and awareness for NF, and took advantage of last month’s F1 race in Austin step out for a great cause.
There are three distinct types of neurofibromatosis (NF): NF1, also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, it is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities.
NF2, also known as Bilateral Acoustic NF (BAN), is very rare and occurs in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom; and Schwannomatosis, a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and its features may vary greatly between patients.
Unlike NF1 and NF2, the inheritance patterns of schwannomatosis are not understood due largely to lack of cases to study. However, it is estimated that 85% of cases are in fact sporadic (no previous family history) and 15% are inherited.
The Children’s Tumor Foundation (CTF) is a non-profit medical foundation dedicated to improving the health and wellbeing of individuals and families affected by NF. One of the biggest challenges CTF faces is getting the word out on NF. Even though it is quite common it is relatively unknown. Thanks to programs such as Racing4Research by CTF, and the sponsorships by motorsports teams and companies such as Pirelli of the programs- the word is getting out – and people are taking notice of NF.
“NF is more common than cystic fibrosis, Duchenne muscular dystrophia, and Huntington’s disease combined yet you’ve most likely never heard of it,” said Jill Beck, Program Manager of Racing4Research. “As a small charity raising money for a common, yet widely unknown disorder, it is critical for us to raise awareness of NF and CTF in addition to our primary goal of raising funds. Partnerships with corporations the caliber of Pirelli are critical. In addition to our fundraising efforts, Racing4Research provides our young NF Heroes (children afflicted with a form of NF) with an amazing experience at the racetrack. Supporting our program means more children will have the chance to attend races, meet teams and drivers, sit in the racecar (and) kick the tires. We give these children a chance to escape the day-to-day realities of living with NF – doctor’s appointments, medication, needles, MRIs, chemotherapy, chronic pain – and just be a kid.”
Beck continued, “In just five years, Racing4Research has raised more than $2M through private donation, corporate sponsorship and the fundraising efforts of our NF Heroes but I believe that’s just the beginning of what we can achieve with this program. For 2013 our goal is to raise $1M in a single year through motorsports.”
With Pirelli’s help, R4R will reach that goal. Recently, Pirelli Motorsport and R4R teamed-up to raise money for CTF – but also to introduce some NF Heroes to the world of Formula 1 racing at the United States Grand Prix at the Circuit of the Americas (COTA) in Austin, Texas. Prior to the race, fans of Pirelli were encouraged to ‘Like’ Pirelli Tire North American on Facebook and post a photo or story about their favorite racing memory. For each new like, Pirelli donated $1, with $5,000 being raised for R4R.
“Working with Racing4Research director Jill Beck on getting Pirelli involved with CTF afforded us the opportunity to raise money for the cause and to spend time in the F1 paddock at the USGP with some great motorsport-loving kids who happen to have neurofibromatosis (NF),” said Rafael Navarro III, Pirelli Tire North America’s VP of communications and media relations. ”There is an organic link with what Racing4Research is doing for the Children’s Tumor Foundation (CTF) and the children afflicted with NF and motorsport, which is a huge part of Pirelli’s heritage. These kids love racing, and so do we! We were impressed with R4R and CTF’s commitment to research and discovering a cure for NF as well as their engagement with the race teams, sponsors and fans. Through some pre-race social media activities and with the support of Pirelli and its Motorsports division, we were able to work with Racing4Research and CTF to raise a little money for research and spend a day with some amazing kids!”
This year’s project between Pirelli and R4R/CTF was successful in that it raised both money and awareness for a little known buy very common affliction. Plus, Pirelli was able to combine its Formula 1 commitments to its charitable activities as well as the most important part of the entire project – to see those NF Heroes smile and have the time of their lives in a grand prix paddock. 2013 will see even greater involvement from Pirelli and hopefully, a cure for neurofibromatosis.