Victoria Jayes
SKM Group - Buffalo Advertising Agency - Creating results through targeted marketing.
Before becoming a parent I thought stories about sick children were sad; since having my son three years ago, I find them terrifying. Good health is something I’ve learned never to take for granted; when Mason has a common ailment like a fever or the sniffles, my heart aches for his poor little body. That’s why when I heard about four-year-old John Millen and everything he’s gone through, it struck a chord with me and I wanted to do whatever I could to help.
John was a normal, healthy boy up until last fall, when he was diagnosed with a brain stem tumor called Diffuse Intrinsic Pontine Glioma (DIPG). It is extremely rare, and makes up 10 to 15 percent of all brain tumors in children, with about 200 to 250 new diagnoses per year in the United States. Because it’s located in the part of the brain that controls vital functions, it is inoperable. The prognosis was grim, with doctors telling John’s parents, Dawn and Chad, that he only had nine to 12 months to live.
John began a six-week radiation treatment at Roswell Park Cancer Institute in October 2013. It shrunk the tumor, but didn’t kill it. His parents opted to seek alternative treatment and in February 2014, John took part in a clinical trial being conducted by Dr. Mark Souweidane at Memorial Sloan Kettering Cancer Center in New York City. For this trial, he underwent a procedure involving surgery that injected a cancer-fighting drug directly into the tumor. Amazingly, almost a year later, John’s tumor hasn’t progressed and he leads a pretty normal life; he attends preschool and loves the Disney Pixar movie “Cars” just like any other four-year-old. However, the tumor is still there and it still shows signs of malignancy.
John was approved by the FDA to participate in a second round of the experimental treatment and flew with his parents and sister to New York City earlier this month, where he became the first person to have undergone the procedure twice. It went well and John is recovering nicely, celebrating his fourth birthday on November 19th in NYC with his family. According to Facebook, they came home on Wednesday!
The Millens are obviously thrilled with the way things are turning out; according to his doctors’ original prognosis, John isn’t even supposed to be with us now. However, costs are mounting, with estimates for the procedure in the $40,000-$50,000 range. Because of its experimental status, the Millens aren’t sure if or how much of the procedure will be covered by insurance. They do know, however, that the research grant that helped fund the first operation isn’t available.
The Millens have documented John’s prognosis and treatment regimen at www.johns-journey.org, where site visitors can also learn more about DIPG, see pictures of John and his family, and even keep up to date with the Millens’ schedule. John’s Journey is also on Facebook.
When I heard about the Millens and everything they’ve gone through (John and my son both attend Rolly Pollies), I knew that SKM could do something to help spread the word about John and his incredible journey. Thanks to Larry’s generosity, I was able to pull some talented people from the agency to work on this project pro bono. What we came up with is an ingenious fundraising challenge that doesn’t cost the donor much and relies on the Internet and social media to raise awareness.
Because of John’s love of racecars, we decided to call it “John’s Journey 100—Start Your Generosity!” The thought is, instead of asking for larger donations from fewer people, we can enlist more people, who we call “Pit Crew Leaders,” to donate $10. Then they task nine of their friends and family to each donate $10, which brings the total donation to $100.
In addition to the initial project plan, our scope of work included writing copy for the website, creating racecar-themed graphics and even a cool racetrack to monitor progress instead of a traditional thermometer. We also helped out with some media relations by writing a news release and pitching the local media to revisit the Millens’ story (they had covered it last year when he had his first surgery).
Supporters can go to either the John’s Journey website or Facebook page to make a donation through PayPal, credit card or personal check. There is also a button on the website’s donate page that makes it easy to post to social media; and tag family and friends to help takes just a few clicks. A sample email is also available, so supporters can cut, paste and send it to their contact list if they wish.
John’s journey is far from over; I suspect he still has a few more laps to go. But the Millens are incredibly touched by the outpouring of support they’ve received from the community and beyond. I’m just glad we were able to help.
To make a donation to support John’s Journey, go to www.johns-journey.org. Also, keep up to date with the Millens on Facebook.
Read more about John’s Journey from local media provided below:
• Orchard Park Bee
• Time Warner Cable News
• WGRZ
• The Buffalo News
Victoria Jayes
Account Supervisor
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