Although research and advocacy still has a long way to go when it comes to pediatric cancers and brain tumors, it has definitely come a long way over the past 20 years. I can visibly see how approaches towards cancers and tumors are changing as time changes with them. It seems like we are more willing and eager to treat survivorship, rather than just the initial diagnosis, as we learn...
This week the United States Supreme Court has been hearing arguments for and against President Obama’s Affordable Care Act. The outcomes of the final ruling, which is scheduled for sometime in June, have a far reaching impact on children diagnosed with brain tumors. Today, the Supreme Court Justices are hearing arguments about the severability of the law, seeing if the...
Each year the CBTF Young Professional’s Group (YPG) holds a Bowl-A-Thon. They ask survivors to attend and become part of a team. The group has become very close and many of the survivors are also members of the YPG group.While people volunteer and become involved for a lot of reasons, for some the event and group change their lives permanently. Here is the story of why CBTF mentor, brand...
I just returned from the memorial service for Anita Lobel, one of our founders. Anita and her husband Leon helped establish CBTF in the wake of their granddaughter, Ilana, being diagnosed with a brain tumor. Leon served as our first President, and Anita and Leon hosted the organization's first meetings. Ilana's parents, Linda and Dennis, and her aunt, Wendy, were also actively...
At the recent Alliance for Childhood Cancer meeting Ruth Hoffman, a mother of a long term childhood cancer survivor, a stellar advocate for childhood cancer and the Executive Director of American Childhood Cancer Organization, started a discussion around what the medical team did or didn’t say when a child was diagnosed with a brain tumor. She had been collecting quotes from parents...
Although social issues are a frequent topic of discussion in the brain tumor survivor community, feeling awkward in social situations doesn’t have to be exclusive to survivors. At a recent young adult survivor get together, this was actually part of our discussion – framed as “Why are other people so awkward?”Just as we might be hesitant to talk about our brain...
In one of our recent blog posts, we talked about Hadley McLean and her incredible fundraiser to help support children who are facing a pediatric brain tumor diagnosis. It was her way of giving back to a community she didn’t choose to be a part of but that one she was forced into. Justin Strada and his mother Terry are also giving back to this community in a different way. ...
Describing oneself as a survivor of a brain tumor or brain cancer as a definition is not clear cut and has been a topic of debate in the cancer community. Although the term “survivor” is generally recognized as someone who is living with their disease from their date of diagnosis, perceiving oneself as a survivor of a serious illness can be a different story when dealing with...
Children’s Brain Tumor Foundation is collaborating with several universities to implement a Career Development Program. The text was written by a vocational rehabilitation psychologist who has worked with survivors for about four years. He has a professional understanding of their needs and current gaps in services. We asked a group of survivors (excitedly I may add) for their opinion on...
The month of March is designated as social work appreciation month. For many families who are facing or have faced a pediatric brain tumor, social workers play an important role in their journey. I have heard from families countless times, how much their social workers have done for them and their families. It is a role that historically is overlooked and underappreciated,...
