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.
Thank you so much for those of you who contributed to Shane’s Future Days on #GivingTuesday!
We raised $800!!!
We are honored to be chosen as your charity to support.
Today is #GivingTuesday, a worldwide day of giving. You can celebrate today by donating to our organization.
Who are we?
We are a small nonprofit that has grown organically through the love and support of friends and family to create a legacy in our son’s honor and memory. Our mission is to raise awareness, research funds and support for families fighting alveolar rhabdomyosarcoma and other rare childhood cancers.
Who is Shane?
Shane was our son. He was diagnosed at 8 months of age with stage 4 alveolar rhabdomyosarcoma, a highly aggressive, currently non-curable form of cancer. His chance of survival was less than 10%. The treatment options for him and others have been unchanged since the 1970’s. He endured chemotherapy, surgeries and radiation. At 19 months he passed away on 3/30/15 after a one year, two day battle.
What have we done?
Research collaborations:
We donated Shane’s tumors to the Children’s Cancer Therapy Development Institute (http://www.cc-tdi.org). Shane’s Legacy Gift of tissue after life has become a useful tool for rhabdomyosarcoma research, and has even helped a new phase of a clinical trial get started. The lab created a primary cell culture from Shane’s tumor … it grows extraordinarily aggressively and quickly, but the lab team says that makes it useful as a “the ultimate challenge” to find new treatments that slow it down. Many new drugs have been tried, and few have worked.
However, there is a bright ray of sunshine: the lab team has found that a particular drug does a great job in Shane’s cells to turn off the major mutation. The results from Shane’s mouse (and 15 other patients’ mice, also mostly from Legacy Gifts) are resulting in a new Phase I-B study of the drug and the drug-plus-chemotherapy for children with rhabdomyosarcoma. The reason this is so notable is that most new treatments for rhabdomyosarcoma were developed on mouse models from 1987, 1982 and earlier. Shane’s mouse leads the “new avatar army” of mouse models that show how contemporary patients will respond to newly-proposed treatments. We can’t be more excited to see if this new treatment with the drug plus chemotherapy will benefit other children with rhabdomyosarcoma.
Child life programs:
We are forever grateful for the assistance we received from the Children’s Hospital of Philadelphia’s Palliative Care Team’s child life program. Our child life specialist has played an important role in our children’s ability to grieve and cope with the death of their brother.
We continue to support this facet of their program in hopes that other families going through an unfortunate diagnosis can find the support they need.
Families affected by childhood cancer:
As a family we has experience a diagnosis and loss of a child through childhood cancer, we can relate to all the familial aspects that are affected by this. We adopt families during the holiday season to provide financial relief and stress of the holidays, so that they can enjoy their time with their family. We also provide gift cards and assistance throughout the year.
Thank you for your consideration!
I know it’s been a awhile, but I assure you we have been busy behind the scenes planning and reaching out to begin our holiday giving program. Everything this year has been slow. I mean when the weather has been in the 60’s (not anymore!), it’s hard to think that the holidays are right around the corner!
We currently have families lined up and are awaiting their wish lists.
The arrival of the holidays fills us with excitement and anxiety. We started the month with a scary accident that landed us back in a medical setting. Thankfully it wasn’t serious, but the entire situation sent us into emotional turmoil and we are still feeling its affects.
What others don’t realize is that it creates a ripple effect that triggers things in our and our children’s lives.
After the loss of Shane, I’ve realized that nothing is “normal” for us.
As we balance the emotional affects of the situation, enter in the
holidays. As happy of a time it can be, at times it can be quite sad when you are missing an important piece of your heart and family. Creating new memories and traditions while missing Shane tugs at our hearts.
Will has brought new life into our family unit. We are so blessed to have him and we often say how Shane picked a good one for us. The new baby brings about a new dynamic for us not just in everyday life, but in our life as a cancer family.
Some have said to us that we can move on from what happen to Shane because we have Will. They are wrong. What we do with Shane’s Future Days gives us purpose and continues Shane’s legacy and allows us to live in a world without him.
Helping families during the holidays is therapy to us. It helps us get through the season. We look forward to the shopping as we remember being on the receiving end and how a simple act can bring so much relief and knowledge knowing the kindness of others.
So as the holidays begin, remember to be thankful for your blessings. Remember those who have lost and be gentle. Sometimes in life we create our own stresses, not realizing there are others dealing with much greater and real stresses that are beyond their control.
Happy Thanksgiving. Thank you for your continued support.
