B.R.A.I.N. of the Treasure Coast holds second annual Glioblastoma Awareness
In observation of Glioblastoma Awareness Day the local 501(c)(3) nonprofit BRAIN Cancer Foundation of the Treasure Coast hosted its second annual fundraiser. This year’s event was held at the Meeting Place, Traditions Square, Port St. Lucie, FL.
Glioblastoma is the most common and aggressive form of a primary malignant brain tumor in adults, according to the National Institutes of Health (NIH). While glioblastoma accounts for nearly 50 percent of all primary malignant brain tumor diagnoses, the standard of care has not been updated in decades. While there is no cure for glioblastoma, traditional treatment standards include
surgery, radiation and chemotherapy. Even with these treatments, the average life expectancy is 12-15 months.
In June of 2019, the United States Senate unanimously voted to designate the third Wednesday in July, as Glioblastoma Awareness Day, after Senator John McCain passed away from glioblastoma. Beau Biden, the son of President Joe Biden, died of glioblastoma in 2015 at the age of 42.
Glioblastoma Awareness Day observed, July 20, 2022, aims to increase public awareness of glioblastoma and honor those who have lost their lives to the devastating disease. In conjunction with the observance, the BRAIN Cancer Foundation of the Treasure Coast is dedicated to educating the public about this aggressive brain tumor and assist GBM patients and their families with funding
to alleviate some of the financial burden of this devastating disease. Glioblastoma is one of the most-costly cancers to treat. The costs associated with brain tumor treatments can be astronomical.
The Brain Tumor Foundation did a calculation of the cost for a patient and family to deal with a brain tumor. From the time of diagnosis, through surgery, treatment, rehabilitation – and through hospice care when needed – totals are close to $700,000 or $800,000. In addition to direct medical costs, there are out-of-pocket expenses for patients and their families which may include:
travel and lodging to and from treatment, home health aides and rehabilitation.
This year, in honor of Glioblastoma Awareness Day 2022, the BCFTC, through the generosity of donors, presented $1,500.00 checks to Lisa Howe and Linda Leitner to assist these families with the financial burden of GBM treatment.
Keynote speaker was U.S. representative for Florida's 18th congressional district, Congressman Brian Mast. Representative Mast is a staunch advocate for the GBM community and has been key in supporting recognition of a national Glioblastoma Awareness Day and federal funding for research supporting the development of new drugs and other effective therapies for glioblastoma.
Rep. Mast has also been pushing for further environmental studies to determine the possible source of the elevated number of reported GBM cases in the Treasure Coast. A highlight of the event were the presentations by the GBM patients and their families, including JB Bird (a 7-yr GBM survivor);
Krystal Kaminski ( daughter of Lisa Howe diagnosed with GBM in December 2021) ; Cindy Herndon Clark (mother of Linda Leitner a pediatric GBM patient who recently suffered a reoccurrence of GBM) and John. King (brother of Jordan King (2-yr GBM survivor).
The B.R.A.I.N Cancer Foundation of the Treasure Coast, was established by Stephanie Ankiel in honor of her late husband Mark Cunningham in May 2019, with a mission of "Bringing Resources and Information Now". Its goal is to promote awareness about cancer, in particular brain cancer, and collect local cancer information via a self-reporting cancer database to study areas with a
high prevalence of cancer diagnosis and to discover possible leads to its cause. The Foundation provides a venue for cancer patients, survivors, and caregivers to come together to share experiences and support each other. Contact Stephanie Ankiel at 772-370-7176 or visit the BCFTC website https://www.braincancertc.org/ for more information.