Allyson Whitney Strong
Story by Jeanne Sager
MONTICELLO May 3, 2013 If the chance of being diagnosed with a rare cancer is slim, the chances of surviving it are even slimmer.
This is the story of Allyson Whitney Strong.
The Class of 2004 Monticello High School graduate was just 24 when she was diagnosed with small cell cervical cancer (SCCC). She’d just graduated summa cum laude with her master’s degree from C.W. Post when a visit to the OB/GYN revealed a problem. There’d been no signs because there are no signs for small cell.
A rare variant of cervical cancer, small cell affects just 100 women a year. Unlike the better known cervical cancers caused by HPV, there is no known cause. And unlike the more common cancers, there have been no clinical trials. The only one ever attempted had to be closed because so few women were eligible.
Small cell cervical cancer moves fast.
It killed Allyson Whitney Strong when she was just 25.
That’s why the Allyson Whitney Foundation exists today. Created in the months after Strong died on Thanksgiving Day, 2011, the local non-profit is her family’s way of keeping her spirit alive.
“People grieve in all different ways,” explains Allyson’s mother Barbara Strong, a second grade teacher in the Fallsburg School District. “I’m still grieving.”
But as they grieved, Barbara, daughter Katy, and other friends and family members were inspired by the message of “hope” Allyson talked about in a documentary film that had been started while she was still alive. They decided the best way to honor Allyson was to further a project Allyson started shortly after her diagnosis, work to fund research for neuroendocrine cancers similar to her own.
According to Barbara Strong, her daughter was trying to find a support group for women in her position when she found the Small Cell Sisterhood, a Facebook group of women all bonded by their diagnosis with a rare cancer. Talking with them, Allyson was trying to find a common denominator among them that would explain their disease, and her work became the impetus for a project currently under way at the University of Texas’ MD Anderson Cancer Center to build a worldwide tumor registry for SCCC. The registry will be used to collect data on treatments and outcomes to make changes in the lives of small cell patients.
The Allyson Whitney Foundation works to keep projects like the registry on track.
But it also works to help people like Allyson, young people whose lives have been upended by cancer.
The needs of a young adult with cancer are different from those of any other age group, Barbara Strong explained.
“Your life is turned upside down,” she said.
Allyson had just finished college and had student loans to repay. She had to decide on whether or not to pursue fertility treatments before undergoing chemotherapy.
These are the sorts of issues that crop up only for cancer patients of a certain age.
These are the sorts of issues the Allyson Whitney Foundation is looking to address with their Life Interrupted grants, 17 of which have already been awarded since the non-profit’s inception in January 2012, several to young adults in the Sullivan County area.
Their funds have come through donations but also through their fundraising events, including a 5K run/walk held last spring that brought in $50,000 and drew some 500 participants. Through the help of people who attend their events or throw events of their own, Barbara Strong says they’re able to give “the gift of Ally” to people who need it.
The Allyson Whitney Foundation’s second annual 5K is coming up on May 11 at the Kauneonga Lake Firefighter’s Pavilion. Registration opens at 7:30 a.m., and the race begins at 10 a.m.
Interested runners can register online ahead of time at http://bit.ly/VYGr79 to raise money and run.
Donations made out to the Allyson Whitney Foundation can be sent to PO Box 586, Rock Hill, NY 12775. Paypal donations can be made by submitting a gift to donate@ allysonwhitney.org or you can visit them at www.crowdrise. com/AllysonWhitney5K.
To find out more about the foundation’s events, visit www.facebook.com/AllysonWhitneyFoundation.