I will be running the 2018 Boston Marathon with John Hancock for Grant Us A Cure, Inc. The foundation's mission is to be the primary resource for doctors and families in the fight against Atypical Teratoid Rhabdoid Tumor (ATRT). Grant Us A Cure raises funds for ATRT research and awareness, while fostering a source of community to those affected by this disease.
This organization is very meaningful to me, as a close family friend, Katherine Grant, battled with ATRT for 3 years and was one of the most courageous people I've ever met. Her family started the organization to raise money to fund ATRT and pediatric brain cancer research. I want to do whatever I can to help this incredible organization find a cure for ATRT.
Please help me reach my fundraising goal by donating to an amazing charity. All of your donations are greatly appreciated!
Just 2 ½ months into her Freshman year at Providence College, Katherine Grant was struck with a severe headache that wouldn’t go away. Within a week and a half, we learned that she’d had a brain hemorrhage which turned out to be caused by a very rare and aggressive pediatric brain tumor – Atypical Teratoid Rhabdoid Tumor (ATRT). This rare tumor usually presents itself in children under the age of 3 (only 30 cases each year). It is even more rare in a teen or adult. In 2014, there was no protocol for this tumor because of its rarity. Whoever comes across it and attempts to treat it is doing the best they can with the limited information available. Imagine the burden on the family trying to decide whose treatment to seek out! It was quite overwhelming and frightening. If the medical profession cannot agree on a standard treatment, how is the lay family supposed to decide where to turn. The tumor is resistant to traditional chemotherapy, and the prognosis is very poor. In the rare cases that treatment is successful, long term side effects and consequences of extremely harsh treatments, leave children with other devastating issues to deal with, from reduced cognitive functioning, to hearing loss, to other cancers, medical conditions, physical conditions. It turns into a lifetime of medical complications and treatments. The other shocking fact is that brain cancer is the #2 killer of children!
Katherine was most courageous during her 3 year battle, and even as she faced her own mortality, she was most concerned with the little children she encountered at the Pedi-Hemonc Clinic, and couldn’t hold back the tears at the idea of these little children having to fight this battle. We made a commitment from the moment we understood the true gravity of this diagnosis, that whatever the outcome for Katherine, we would commit ourselves to funding research so that future families would not have to hear that ‘there is no protocol’ and but rather, ‘it is curable.’
Our goal is to raise significant funds, using all means available (social media, fundraising activities, email, direct mail, grant writing, to name a few) to support researchers working on learning more about ATRT. We currently know we would like to fund medical institutions/researchers who are currently involved in ATRT research (such as Dana Farber Cancer Institute where Dr. Charlie Roberts is doing significant research on ATRT, and MGH where Katherine was treated and motivated researchers to do ATRT research as well).
We also wish to serve as a base of support and information for medical professionals as well as families who need to find resources and information and networks for ATRT. In her 21 years, Katherine had a unique gift of ‘bringing people together.’ We want to bring this gift of hers to our cause by bringing people together to fund research for pediatric brain cancer that will put an end to it’s record as #2 killer of children.