Blogs: Families, Foundations & Researchers
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.”
Groundbreaking Advancements at the Children’s Brain Tumor Network
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.
2/15 is International Childhood Cancer Day
To honor International Childhood Cancer Day (ICCD) on February 15th the World Health Organization Global Initiative for Childhood Cancer has created #ThroughTheirHands, an advocacy activity to show support for families and caregivers who make a difference for children with cancer. With #ThroughTheirHands you can decorate a virtual handprint and write a message of hope. You can participate through the end of March, and your handprint and message will be shared on the ICCD website. We would love your participation to demonstrate the dedication and impact of our Swifty Foundation/Gift from a Child community!
The Impact of Gift From a Child through Children’s National Hospital
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 Making a Difference
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.
10 Years Later…a sad and beautiful world
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.
SNO 2022 – GFAC Collaborators Receive Awards
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.
Donated tissue is an informative tool in medical research
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.
Create a Wave of Impact With Your Support
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.
Help and Hope Podcast Part of Advocacy Push
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.
Gift from a Child
Is a Swifty Foundation Program
Swifty is a recipient of the GuideStar Gold Seal of Transparency
Connect With Us
Site by: Paul Gregory Media