GOING GRAY IN MAY
May is brain tumor awareness month and it is represented by the color gray. Awareness is important because it inspires people to do something. We need others to understand the urgency for funding pediatric brain tumor research. There are far too many children in treatment for brain tumors who need safer, more effective treatment options today.
We’re asking our supporters to think about the children who inspired them to support this cause, and to help us honor them by going gray in May. Post a gray ribbon to your social media. Follow us on Facebook. Share information about pediatric brain tumors and why funding research is so important. Send a card to someone you know who has been impacted by this disease. Make a donation. Set up a fundraiser. Volunteer. Sign up for a 5K (such as this one in support of the Cristian Rivera Foundation). There are so many ways to go gray.
The profiles below highlight some incredible families who have been impacted by a pediatric brain tumor diagnosis and the ways in which they are doing something about it. We thank you for honoring children with brain tumors and supporting our progress with your own efforts to Go Gray in May! #gogray #braintumorawareness #dosomething
THE GUSTAFSONS GO GRAY TO RAISE AWARENESS ABOUT TISSUE DONATION
Allen and Patti Gustafson founded the Swifty Foundation with their late son, Michael, to raise research funds and awareness for pediatric brain cancer. Michael passed away after battling relapsed medulloblastoma at the age of 15, and he decided to donate his tumor to research via rapid autopsy.
After learning about the positive impact Michael’s donation was having on research, the Gustafsons founded the Gift from a Child initiative through Swifty to ensure other families like theirs would be informed of the opportunity to donate their child’s tissue post-mortem, and that there would be an infrastructure in place to enable such donations to benefit research.
“When Michael came up with his Master Plan to ‘donate his body to science so they can find a cure,’ we had no idea that his plan would become Swifty’s plan. Our mission became raising awareness about the need for and lack of post-mortem tissue for research.”
Researchers rely on tumor tissue to make discoveries related to the causes and behavior of pediatric brain tumors, and to explore potential new treatments. They need tumor samples from many pediatric brain tumor types that differ in location, histology, genetic markers, and treatment histories. The more tissue samples they have access to, the better their chance of finding answers to the questions holding back discoveries in pediatric brain tumors.
“We learned that many bereaved families would have liked to donate but were never asked,” said Patti. “Knowing the importance of tissue donation for finding cures and wanting to affect a cultural change, we needed to raise awareness around this difficult topic by bringing people together to have a unified voice.”
This May, please help us to raise awareness about the Gift from a Child program and the importance of tumor tissue donation in the pediatric brain tumor community.
HEAD TO THE HILL
The National Brain Tumor Society’s annual Head to the Hill event has become a powerful vehicle to ensure the voice of the brain tumor community is being heard, and our team is proud to participate by sharing our story with Congress.
On May 3, 2022, our Program Director, Cindy Campbell, will share her personal experience with pediatric brain tumors to advocate for the federal government to make strategic investments in pediatric brain tumor research and improve health care for the pediatric brain tumor community.
Hundreds of brain tumor advocates will join Campbell in raising their voices as they meet with U.S. Senators and U.S. Representatives throughout the day. Head to the Hill will help these policymakers better understand the urgent, unmet needs of the brain tumor community and the policies that are vital to ensuring availability of treatments, increased scientific research, better quality of life, and the discovery of a cure. These virtual meetings enable effective, meaningful interactions with members of Congress from brain tumor patients, caregivers, researchers, policy makers, and more.
We hope that that this year’s Head to the Hill continues to result in action and support from Congress, and we are grateful that the National Brain Tumor Society has arranged this incredible event year-after-year.
Thank you for continuing to honor children with brain tumors and supporting our progress with your own efforts to Go Gray in May! #gogray #braintumorawareness #dosomething
JOHN RIVERA RAISES AWARENESS FOR DIPG IN MEMORY OF CRISTIAN
John “Gungie” Rivera presides over the Cristian Rivera Foundation (CRF), one of the original donors to the Children’s Brain Tumor Project lab in support of Dr. Mark Souweidane’s research. Over the years, CRF has donated close to $1,500,000! Read more about his recent record-breaking gift here.
Rivera lost his six-year-old son, Cristian, to diffuse intrinsic pontine glioma (DIPG) in 2009, and he has worked so hard to raise much-needed awareness for this horrific diagnosis. DIPG primarily affects children under the age of 9 and there is currently no cure for this inoperable cancer. “Ever since Cristian passed away, I have committed myself to help find a cure for this deadly disease,” said Rivera. “My hope is that no other family would have to go through the grief of losing a beloved child to DIPG.”
Rivera is dedicated to finding a cure for DIPG and has assembled a high-profile committee to help him achieve his goals. Inspired by his son Cristian’s positive and encouraging spirit, John also authored and published his first children’s book entitled Cristian’s Journey to spread Cristian’s message of benevolence and love despite tragic circumstances.
“Watching Cristian battle DIPG gave me the impetus to raise awareness and help eradicate DIPG from our world. After experiencing the grief of losing your child in such a horrific way, it’s easy to give up hope. I’ve dedicated my life to this so that other families will not have to experience the pain that I did or feel like they’re alone. My hope is that children diagnosed with DIPG will have a chance to fight and to live.”