I'm Too Young For This! Cancer Foundation CEO Matthew Zachary*
Young adults are one of single largest populations affected by blood cancers. Occurring most frequently in patients 15-39 years of age, Hodgkin lymphoma alone will account for approximately 8,510 blood cancer diagnoses in Americans this year.
To address the unique needs of young adults (YA) such as these, Matthew Zachary, a 12-year pediatric brain cancer survivor, created the I'm Too Young For This! Cancer Foundation (i[2]y), an advocacy, support, and research organization that works exclusively on behalf of survivors and care providers under the age of 40. Their mission is to end isolation, improve quality of life, and provide meaningful survivorship for young adults affected by cancer.
Zachary corresponded via email to answer questions and provide readers with more information on his organization.
Q: Why did you establish i[2]y?
A: A public health report came out of the National Cancer Institute in the Fall of 2006 called 'Closing The Gap' . This report exclaimed that 5-year survival rates in young adults (aged 15-39) had not improved in 30 years. Considering how far we'd come with every other age bracket, this was a slap in the face to my entire generation. I figured that, since the last 30 years of cancer 'progress' have clearly failed the next generation of survivors, there is no reason to think the next 30 will be any different, unless change happens now.
There was a need to let the world know that people in their late teens, 20s, and 30s CAN and DO get cancer and that they are a grossly underserved community. Here are some statistics.
There was a need to homogenize the fragmented and siloed young adult organizations that were already out there and build a national brand to increase visibility and give voice to this grotesque public health disparity facing over 50 million Americans. Here's a little more info on the topic.
Q: Are young adults, who are childhood cancer survivors and are now dealing with the long-term effects of treatment, included in your foundation's initiatives?
A: The i[2]y YA community includes all survivors in their late teens, 20s, and 30s, regardless of when they were diagnosed. We have 6 month, 6 year, 16 year and 26 year survivors in our little fight club. Once the long-term peds age out of their continuum of care, it's like getting kicked out the door of a moving car, left for dead on the road. i[2]y is the "What's Next" for all long-term survivors of childhood cancer.
Q: What is your Stupid Cancer Doctor Smart program and how can it help to improve the outlook for young adults who may be facing a blood cancer diagnosis in the future?
A: The number one reason there has been no improvement in survival rates for YA is due to late detection. The overwhelming majority of YA are diagnosed at near-end stage, reducing their outcome potential. The goal is to reduce the risk of Stage IV late detection and ensure that the patients will benefit from the advances in medicine. By educating the next generation of residents, interns, and fellows about symptom literacy and the YA oncology disparities, we can increate the potential to foster that goal.
Q: In what way does i[2]y partner with local chapters of organizations, such as The Leukemia and Lymphoma Society?
A: With, through, and beyond their diagnosis, YA just want to feel as 'normal' as possible, not stigmatized, not isolated, and certainly not ostracized. Many LLS chapters have already constituted and aggregated a small population of YAs into their bosom, but in general the support programs they offer are somewhat old-fashioned. By working with these chapters, we are able to develop non-clinical and non-threatening offline social mixers and young professionals events to "meet them where they're at", give them direct peer support and engender more community.... All over a few beers.
In NYC and other regions, we are able to partner more richly and develop groundbreaking conferences specifically for this population. There has never been a standardized national model of Summit before. They're all about breast cancer. It was time to bring to market this unique new model.
Q: What programs does i[2]y facilitate that provide one-on-one peer support to young adults diagnosed with cancer?
A: Offline, our "stupid cancer" line of social events are the most tangible answer to this question. Our website, radio show and social media avatars serve as vehicles and clearinghouses to point young adult survivors toward trusted, credible services that provide direct 1-1 peer support. Our most relevant and valuable partner in this effort is Imerman Angels.
Q: What is the Stupid Cancer Show? What topics and guests have been featured that may be of particular interest to young adults diagnosed with a blood cancer?
A: The Stupid Cancer Show is the voice of the nearly 5 million YA affected by cancer. It is the only internationally syndicated webcast of it's kind and has drawn global praise in it's first four seasons. It has also attracted A-list guests including celebrities, young adult cancer advocates, notable oncologists, authors, social media gurus, and musician/survivors. The broadcast is a disruptive and countercultural medium that is challenging the status quo and demanding change from the establishment. Click here for a comprehensive list of topics and all guests.
For more info: Find your local i[2]y chapter, The Stupid Cancer Blog
*photo and logo courtesy of Matthew Zachary
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