Blogs: Families, Foundations & Researchers
Children’s National Hospital in Washington D.C. was one of twelve institutions to receive Gift from a Child (GFAC) supported tissue donations in 2022. Children’s National is also home to a GFAC Center of Excellence. The Children’s National GFAC team is led by Child Tissue Navigator Mr. Augustine Eze, M.S. and co-lead investigators Drs. Javad Nazarian, Ph.D. and Miriam Bornhorst, M.D. This team spent the last year deepening and growing partnerships, improving the way families are approached about donation, and advancing research to further GFAC’s mission
Families who endure losing a child to brain cancer is a club no one wants to be in. It’s a club where members navigate hourly around the emptiness left by the child who passed too soon, while knowing that less than 8% of government research dollars go to finding cures for the cancer that took that child from them. Here are a few stories about some of the families who helped launch Gift from a Child.
Our families work together to encourage children who have cancer and their families to donate brain tissue to empower research. It is through accelerating research that cures will be found and families will no longer experience the devastating loss of a child as a result of brain cancer.
None of our families would have chosen this life, but together, we have accomplished so much.
My wise husband often reminds me, “It’s a sad and beautiful world.” This story is like that. It’s beautiful and sad.
You see, 10 years ago today, our son Michael donated his brain and spine to research when he died from childhood brain cancer. He came up with the idea himself, no doctor or friend suggested he help research in this way. Then, five days later my seemingly healthy mom had a heart attack at Mikey’s funeral … out of the blue she died at her grandson’s funeral lunch.
Gift from a Child was well represented in Tampa, Florida at the 2022 annual meeting for the Society for Neuro-oncology (SNO). This annual meeting is the largest national gathering of neuro-oncology professionals.
The week kicked off with education sessions, co-chaired by one of GFAC’s PIs, Dr. Michelle Monje, of Stanford. The focus of her track was the intersection of neuroscience and neuro- oncology.
In collaboration with Alex’s Lemonade Stand, Swifty Foundation (funder of GFAC) co-funded one of the early career researchers, Dr. Zulekha Qadeer. Dr. Qadeer won an award for and presented her abstract titled “ DDDR-33 – Targeting TGF² pathway dependencies in group 3 medulloblastoma”.
GFAC had the opportunity to present two abstracts of our own findings. They were both presented by our scientific intern, Nicole Lyons. We were thrilled to share our latest data, that we have had 195 (now over 200) successful post-mortem brain tumor tissue donations from over 50 (now over 55) different institutions since 2019.
Overall, SNO was a fantastic opportunity to connect with neuro-oncology professionals, both familiar and new. We are grateful for the chance to share our experiences and knowledge with the larger community in the hope of helping future patients.
Among the many methods scientists use to understand human diseases, donated patient tissue is a uniquely precious tool. A recent study published this month in Nature Genetics investigated the heterogeneity of cell types and gene expression in DIPG/DMG patient tissue possessing the characteristic H3K27M histone mutation.
Dr. Mariella Filbin’s team, in collaboration with Dr. Mats Nilsson in Stockholm and Dr. Michelle Monje at Stanford (a GFAC Center of Excellence), utilized patient tissue donated across several years to analyze the cellular composition of these aggressive pediatric tumors. Previous research has suggested these tumors arise not from neurons, but from cells resembling oligodendrocyte precursor cells (OPCs). OPCs have many important functions in the brain throughout the lifespan. This study addresses ongoing questions in DMG research including: the gene expression profiles of these cancer cells, changes in expression between different brain region and patients, and the cellular arrangement of the tumor.
Gift from a Child’s work is rippling across the pediatric cancer community. It’s been exciting to work with so
many families, researchers, organizations, and supporters over the past eight years to create a national
program serving childhood brain cancer families and accelerating scientific discoveries.
Michael made the decision to donate his post-mortem brain tissue to research. That was our call to action,
and we jumped in. With almost $6 million invested, we have accomplished so much. With
your help, we can do much, much more.
Patti and Al Gustafson will go anywhere and talk to anyone about their son Michael, who died of brain cancer at age 15. The Gustafsons want everyone to get the message: families can help find a cure for cancer by donating their child’s post-mortem brain tissue to research.
Because Michael’s decision to donate his brain to find a cure for cancer intersects with so many other important research initiatives, a wave of positive change is transforming the face of childhood brain cancer research.
But there is so much work to do: Survival rates for children diagnosed with brain cancer have flatlined over the last 40 years and brain cancer is the number one cause of death by disease for people 20 years and younger. We need to do things differently for future families!
Our 2022 Impact Report shows what we have accomplished and how we will accelerate breakthrough cancer research, improve treatments, and ultimately find CURES for childhood brain cancer.
This autumn, two events put childhood cancer in the spotlight as the #1 cause of death by disease in children: the first BrainStorm Summit at CureFest and the White House Forum on Childhood Cancer. At both events, families who have lost children to brain cancer shared their experiences with top researchers and policymakers.
Gift from a Child’s Ginny McLean was on the steering committee for the inaugural BrainStorm Summit, a day-long conference held before the annual CureFest for Childhood Cancer in DC. Gift from a Child hosted a panel discussion on post-mortem tissue donation and data-driven discoveries in pediatric brain tumors.
Families who lose a child to brain cancer, want doctors to give them the option to donate their child’s tissue.
Donating tissue not only contributes to research for a cure, but donating helps families grieve and see something good come from their tragic loss.