About
Shane’s Future Days is a 501(c)(3) volunteer non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395
What is Alveolar Rhabdomyosarcoma?
Click below to learn more about this rare childhood cancer and what we can do to fight it.
What does your donation goes towards?
Rhabdomyosarcoma is currently non-curable pediatric cancer and your donation goes directly to the research to help fight it.
What: Shane’s Future Days 2nd Annual Celebration of Life
Where: VE soccer club
130 Davisville Road
Warminster, Pennsylvania 18974
When: Saturday, June 4, 2016
Time: 1pm- 6pm
Cost: $35 per an adult, $10 for ages 12-20 and children under 12 are FREE.
The price of your ticket includes an open bar (beer & wine), picnic food menu, music provided by a D.J., and inflatables and snowcones for the kids.
We will have raffles, a 50/50 and silent auction too!
We hope to make this year’s event as successful as last year’s!
In 2015, SFD’s COL raised $9,728.30 and had 185 adults, 75 kids and many more children under the age of 3 in attendance. Shane’s Future Days matched the proceeds raised. In August, we attended a pediatric cancer nano course in Colorado. There, we donated $20,000 to The Children’s Cancer Therapy Development Institute where we donated Shane’s tumors. The money assisted in purchasing laboratory equipment and funding pre-clinical pediatric drug trials We also were able to donate $2,000 to the Children’s Hospital of Philadelphia’s Pediatric Advanced Care Team. This team supports families whose child is terminally ill and goes into hospice care. In addition, during the holidays we were able to support two families and purchase their holiday gifts, as well as decorations.
Paul wrote this post to fellow Pearl Jam fans. It beautifully explains the reason we named Shane’s foundation after the song “Future Days.”
We named our foundation after the song Future Days. Why? We listened to Lightning Bolt on repeat on our chemo trips to the hospital. Our son, Shane’s favorite song was Getaway. It was because of the pace and the beat, but I’m sure there was a hidden meaning behind it. Our baby Shane was dying from cancer. The line in Future Days, “if I ever were to lose you, I’d surely lose myself” rang true. We were afraid. If we lost Shane, would we be able to go on? Would we lose ourselves? Shane was doing so well. 4 months into his treatment, he was cancer free. But that was only for a fleeting moment, because Shane’s rare cancer always returned.
The week we found out Shane’s cancer relapsed, we met with one of the top doctors in the world, for Shane’s cancer. We were told to enjoy him. “It’s the wind before the storm. You have done EVERYTHING you could as parents. Just love him. We all search for miracles. Your miracle was how well he took to the treatment. Your miracle was his quality of life through his journey. Babies with this cancer aren’t supposed to live long. Shane did. That’s your miracle.”
At that moment, everything changed. There wasn’t anything we could physically do, except continue to love him. And we did. Don’t get me wrong, we did everything in our power to help him, even during his last weeks on earth. With this cancer, you run out of time. We cherished him. Shane never missed a beat, up until the last couple weeks he was with us. After a year and two day battle, he passed away at 19 months old.
During Storytellers, Ed spoke about the song Alive. “To be alive was a curse.” Now, over the years the song has turned into an anthem of life. “The curse has been lifted.” For us, the meaning of Future Days changed. A song about the fear of loss, for us became an anthem of hope.
We move forward as a family. We tell our kids, Shane isn’t gone, he lives in our heart. As painful as it was and still is, we move forward keeping Shane’s legacy alive, through his foundation Shane’s Future Days. We raise money for rare pediatric cancer with the hope that one day they will find a cure for his cancer. While it won’t save Shane today, our hope is that it will save a future Shane. It’s all about hope as move forward into the Future.
We’ll be at the Philly shows. Our foundation is hosting a tailgate April 29th from 4p.m.- 7p.m. at the Holiday Inn by the Philadelphia Stadiums (900 Packer Ave). Come out and raise awareness for pediatric cancer research. All proceeds go to pediatric cancer research. $35 advance purchase/$40 at the door
Music is a gift. It can lift you out of dark places. Thanks for reading.
Shane’s Future Days
presents:
Pearl Jam Tailgate for Good
Hosted with the Phan Cave
to benefit Childhood Cancer
Holiday Inn Philadelphia Stadium
900 Packer Ave, Philadelphia, PA 19148
Friday, April 29, 2016 4pm-7pm
Ticket price: $35 per person
(Price includes: Capital Grille burgers, smoked kielbasa,
and German style wursts, side salads, light appetizers and BEER!)
The reason why?
Events like this enable Shane’s Future Days to provide research funds to assist with purchasing of laboratory equipment, as well as funding pediatric preclinical cancer trials. It also helps us assist the Children’s Hospital of Philadelphia’s Palliative Care Team who provide the world’s best care to patients with currently incurable diseases. Additionally and most importantly, it allows us to expand our footprint, permitting us to provide for children and families affected by rare childhood cancers with support that they need along their journey.
Below is the video our CL therapist made for our family and Paul’s speech from the Celebration of Life. We watched it the night before and could not bring ourselves to show it at the COL. It was too raw and emotional on such a heavy day for us. It is however why we began SFD.
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