Regina Karchner says she feels as if she’s been a patient advocate for people with brain cancer almost from birth. When she was three, her father died of a brain tumor. When she was 16, Regina was diagnosed with brain cancer. While in the hospital, she heard about the Children’s Brain Tumor Foundation (CBTF), and as soon as she could, she became a volunteer with the organization. Today she is a social work regional coordinator at CBTF.

She says that as an advocate, she feels she has a responsibility to help families deal with devastating news, to talk about death, and how to cope with the emotional trauma of it. She also advocates for survivors like herself.  

“I am just such an advocate for the need for long-term programming for brain cancer survivors, because it’s so different from other cancers. The emotional, cognitive, and physical impacts of brain tumors are dramatic, even if the individuals survive.  

“We are working with people in their 40s who were the first group of childhood survivors, and there’s nowhere to go that matches their needs; they can’t function enough to live independently and work full time. It’s a big problem in the medical world, and even in schools, they don’t understand brain tumors; they don’t see it as a traumatic brain injury, which it is, and even the most well-intended schools don’t really know what to do or how to handle the patients.”

“We found that survivors with better social skills have a better quality of life, so we are now trying to focus on kids in elementary school, giving them the social skills they need to survive and that are hard to catch up on later in life. They can get math or history or other subjects anytime, but the social skills are essential” 

Regina also serves on a CIRM Clinical Advisory Panel (CAP) for a clinical trial for children with brain cancer. She says having the patient advocate at the table is vital to the trial’s success. “I help the researchers understand the needs of the patient, and even understand why families don’t enroll in trials. 80% of families who have kids with brain tumors are on Medicaid, so it’s a select group of people who can afford to be in these trials. Letting the researchers know that and coming up with ways to help them is so important.” 

She says it’s challenging work, but also very rewarding. “It feels wonderful to help families in a time of need. I feel I grow as a person and as a parent; I have learned so much that helps me in my personal life, and I am grateful for having a healthy family and being a healthy survivor myself.”

Our 2021-22 Annual Report is now online. It’s filled with information about the work we have done over the last year (we are on a fiscal calendar year from July 1 – June 30), the people who helped us do it, and some of the people who benefited from it. One of those is Regina Karchner.