Blogs: Families, Foundations & Researchers
As December rolls around and gift-giving season is near I’d like to share what could be the best gift you give all season. If you know a family who lost a child (or other loved one) consider sending them a picture of their child doing something silly, engaging, or just really cute. If you can make it a picture they haven’t seen before that’s the best.If you know a parent with a child-sized hole in their heart, consider giving them the gift of a new story to tell, a new vision to hold of that oh-so-longed-for child. You will have given a priceless gift.
Dr. Smith is the Division Chief of Pediatric Hematology/Oncology and Neuro-Oncology at Orlando Health-Arnold Palmer Hospital for Children. She has spent her career caring for infants, children, and young adults fighting central nervous system tumors. Dr. Smith heads up Gift from a Child’s (GFAC) Center of Excellence as the PI at APH. Dr. Smith has this to say about GFAC, a national post-mortem brain tumor donation program,
After McKenna Claire Wetzel passed from diffuse intrinsic pontine glioma (DIPG), her family made the courageous decision to donate her brain and spinal cord to research. McKenna’s mom Kristine said donating McKenna’s tumor tissue “has made all the difference for us, knowing that she is still here in a sense, working to save the next child diagnosed. It has given us some peace, knowing that her death was not in vain and that our spunky, sassy, loving girl lives on to fight another day.“
As a pediatric neurosurgeon, Dr. Jeffrey P. Greenfield is a strong proponent of transitional neurosurgery: caring for patients with specific conditions from childhood through adulthood. Compassionate clinical care, research and education are all central to his philosophy.
Gift from a Child (GFAC) works as a force against the gray, bleak diagnosis of brain cancer. At the worst time imaginable we offer families the opportunity to do some good, to do something hopeful for future families. Tissue donation fuels research that will lead to the cures we lack today.
Medulloblastoma is the most common type of pediatric brain cancer, accounting for 20% of diagnoses. In a recent breakthrough, researchers at Johns Hopkins Kimmel Cancer Center have identified a new molecule specific to SHH medulloblastomas. This molecule could potentially be used for early detection and as a new therapeutic target. These findings represent a much needed step forward in changing the prognosis for medulloblastoma. This research would not have been possible without tissue samples and illustrates the immense impact of tissue donation.
David Kram, MD is a powerful advocate for Gift from a Child (GFAC) and post-mortem tissue donation. In a video for GFAC he spoke about his first experience introducing GFAC to a family whose daughter had a terminal brain cancer diagnosis. This family made the generous decision to donate their daughter’s tissue after her passing. Dr. Kram said “I know that these tissue donations dramatically improve research capability. These post treatment samples are rare and critical and I’ve seen the good it can provide a grieving family. I believe Gift from a Child offers something extraordinary.”
In a beautiful twist of fate, this month Michael Gustafson’s cousin, Michael, helped fundraise for the Swifty Foundation as a second grader at Prairie Elementary School in Naperville, Illinois. One hundred percent of the money raised at Prairie will fund pediatric brain cancer research. We are so grateful to the families and staff of this big-hearted, generous school.
Julian Roque was diagnosed with diffuse intrinsic pontine glioma (DIPG) when he was just two years old. DIPG is an aggressive, fast growing tumor that appears in the brain stem and is considered a terminal diagnosis. Julian passed away in 2018, four years after his diagnosis. Since Julian’s passing the Roque family has been dedicated to raising awareness of DIPG with the goal of ultimately curing this disease.
Julian’s family made the courageous decision to donate his tumor to research and have since become advocates for tissue donation. In an interview about the impact tissue donation has had on their family Julian’s dad said “Julian knew that his donation was going to be meaningful. It made him happy. He knew that by donating his tumor that his friends might be saved some day.”
Gift from a Child (GFAC) and the Children’s Brain Tumor Network (CBTN) work together to help create a world where no family is faced with the devastating reality of an incurable brain tumor. CBTN supports GFAC’s mission to provide families and children with the opportunity to advance pediatric cancer research through the incredible gift of brain tissue donation. The Swifty Foundation, funder of GFAC, sits on the CBTN Executive Council.