Why we started Closer to the Cure
As our family entered into the unknown "Cancer" territory we found the need to learn more than we ever wanted to about Pediatric Brain Tumors. Knowledge is power and in a world that is so uncertain, this was a bit of a comfort. A spectrum of emotions guided us through the journey and through every inconceivable decision laid upon us. Decisions that no parent/person should ever have to make. Each step is a crash course in Oncology, Anatomy, Psychology, Physiology, Chemistry, Nutrition, etc. Learning more and more about treatments, side effects, support groups, protocols, you name it. The information required to make an informed decision simply overwhelming on a normal day, let alone under emergency conditions. While we are not experts in any sense of the word, we started ClosertotheCure.org in hopes of bringing together an eager community. One that so desperately needs hope and your support to advance research and get Closer to the Cure.
Who is Closer to the Cure?
Closertothecure.org is a fundraising and information sharing vehicle created to support pediatric brain tumor research and provide support & resources to all affected by Pediatric Cancer. We are not a research foundation, however, in 2019 we partnered with The Carson Leslie Foundation #cureMEdullo and 2018 Alex's Lemonade Stand Foundation (ALSF). Both foundations are registered 501(c)3 pediatric research charity foundations. Our partnership with CLF #cureMedullo allows us to become loud on the "hill" in DC and push legislative action toward a cure. CLF is the only current Medulloblastoma focused foundation and has made some critical advances in Medulloblastoma by creating synergistic partnerships.
Who is Cooper ?
Cooper is an awesome, active 9-year-old boy who is the honorary host of our inspiration for ClosertotheCure.org.
In December 2016, Cooper (age 6) was diagnosed with Medulloblastoma, a type of pediatric brain tumor. He underwent successful surgery to remove the tumor, rehabilitation, radiation therapy, and 14 months of chemotherapy. He finished treatment in March 2018. We have a new way at looking at the world and try and find silver linings whenever possible. Cooper is now two years post treatment. Our journey after Cooper's diagnosis reminds us to live life to its fullest each day.
Cooper has started the 4th grade (remotely) and is making great strides so far. His strength, perseverance and zest for life is apparent whenever you see him playing his sports, cracking a joke, dancing around with his sister or hanging out with his buddies. He is a true inspiration!
Who is Jennifer?
Jennifer is Cooper's mom. With Cooper's diagnosis, she shifted her role from a startup CEO to focus full-time on managing Cooper's treatment and recovery.
During treatment, Jennifer acted as Cooper's chief advocate, coordinating Cooper's diverse network of clinical, education, rehabilitative, nutrition, local community, and insurance teams. During treatment, she frequently lived at Children's and Spaulding Rehabilitation during Cooper's 100+ inpatient nights ... all while still being a mom to both Cooper and his sister Grace. Her efforts ensured Cooper was able to adhere to his full clinical protocol while undergoing considerable rehabilitation, and supplementing his nutrition to offset deficits in his bloodcounts, thereby expediting recovery during each chemotherapy cycle.
Jennifer started Closer to the Cure as a way to channel fundraising efforts to advance treatment for Medulloblastoma (both in research and resulting treatment protocols) as well as other types of pediatric brain tumors.
In addition to running Closer to the Cure, Jennifer is a member of PPFAC (Pediatric Patient and Family Advocacy Council) at Dana Farber where she is the liaison for the Legislative Action Network.
Feel free to contact Jennifer anytime.
It takes a village...
We understand first-hand the impact a Medulloblastoma or pediatric cancer diagnosis has on family. We are tremendously grateful to our friends, family and sponsors, who came together to support us and continue to support us through our "new normal". Thank you for your desire to help us and all of the families affected by this terrible disease to get Closer to the Cure.