We asked a couple of our attendees to write about their experience attending a group visit with The Kortney Rose Foundation (KRF) to the Children’s Hospital of Philadelphia (CHOP) to learn more about the research KRF supports including the Children’s Brain Tumor Tissue Consortium (CBTTC) and a tour of the bio repository.
“There were several times during our tour of CHOP that I had to choke back the tears from my eyes simply because of the remarkable work being done and the love of the people performing it.” –Jocelyn Rineer, Board of Trustees, The Kortney Rose Foundation
Blog Post written by Jocelyn Rineer, Board of Directors, KRF
I met Kristen Gillette, Founder of The Kortney Rose Foundation several years ago during The Kortney Rose Foundation /Turning Point fundraiser to “Help Get Brain Tumors off Kids’ Minds”. After this meeting, I asked Kristen to come speak to the Insurance Professionals of Monmouth County about The Kortney Rose Foundation and little did I know but my life would be forever changed.
Kristen and The Kortney Rose Foundation fundraise and fight daily to find better treatments and a cure for pediatric brain tumors. The Kortney Rose Foundation is one of the initial foundation supporters of the Children’s Brain Tumor Tissue Consortium (CBTTC) and as a result, I recently had the distinguished pleasure of being invited to visit Children’s Hospital of Philadelphia (CHOP) by Kristen Gillette, Founder of The Kortney Rose Foundation and this trip was truly a life changing event for me.
Dr. Adam Resnick is the CBTTC’S Scientific Co-Chair, Director of the Center for Data Driven Discover in Biomedicine and the Principal Investigator (PI) for the CBTTC at CHOP, talked about the Children’s Brain Tumor Tissue Consortium and the strides it has made from having one institution, CHOP, collect tissue samples, data and research to a now staggering 17 institutions, and growing, throughout the international community all committed to the CBTTC. Dr. Resnick’s enthusiasm and passion is contagious. It was wonderful to see the mutual respect & admiration between Dr. Resnick and Kristen as they both continue to fight for research and ending children’s brain tumors.
The CBTTC is a large tissue & data repository that is available to all researchers, scientists and doctors throughout the world. The one caveat to using tissue samples or review research is that if you take something out you must also share any findings back with the CBTTC, hence the collaboration. This is extraordinary because research findings are shared prior to publication which is not the norm within the scientific community. This shows how the CBTTC is dedicated to children and finding cures for pediatric brain tumors.
We were able to see the robot that pulls the tissue samples for use in research and see the rooms & refrigeration units where these samples are held and WOW! The room is kept at a very cold temperature as are the refrigeration units themselves. There are extensive security measures and electrical back-ups in place to ensure that the samples are not compromised in a weather related or other type of event.
There were several times during our tour of CHOP that I had to choke back the tears from my eyes simply because of the remarkable work being done and the love of the people performing it. In summary, I am awestruck and so very proud to be a volunteer, supporter and most recently a Board member of The Kortney Rose Foundation. It is overwhelming to me that only 4% of all National Cancer Institute research dollars goes to fund all pediatric cancers. When I see the impact of The Kortney Rose Foundation’s fundraising efforts and what it has meant to children’s pediatric brain tumors it simply makes me want to do more. I feel that everyone would benefit from a visit to this amazing facility but in the meantime, everyone can do their part to “Help Get Brain Tumors off Kids’ Minds”.