Founding Families

Because Together We Can Do More

The Story of our Founding Families

When my son, 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. This led to the discovery that many families would have liked to donate, but were never asked. Knowing the importance of tissue donation for finding cures and wanting to affect a cultural change, we needed to bring people together to have a unified voice around this difficult topic.

In Dec. 2018, we gathered families from across the country at a Family Forum to hear about their donation experiences. We cried for our children, shared how knowing they are helping other children through their donations helps our grief and discussed appropriate ways to approach families about this sensitive topic. Families that were not able to donate shared their feelings of having missed an opportunity to help and to have that legacy for their child. 

This gathering, these families, became the launching point for Gift from a Child. Their handprints are on this website in their stories on our Family Support page, they helped develop our Family Companioning program and many act as companions. Some of the families with foundations are financial supporters of GFAC as well. This page is to recognize their importance to this program, to thank them and most especially to recognize their amazing children who left us all too soon.

 

 

What Our Decision to Donate Has Meant to Us.

The following families and foundations participated in the launch of Gift from a Child

These are our children who inspired us all to do more, to do better.

The Family of Nick Baratelle
The Family of Lejla Mae Bekric
The Family of Emily Gould
The Family of Michael Gustafson
The Family of Andrew Haggenmiller
The Family of Jennifer Lynn Kranz
The Family of John McNicholas
The Family of Gabriella Miller
The Family of Charlie Poole
The Family of Julian Gabriel Roque
The Family of Heather Ann Serafin
The Family of Gracie Skuches
The Family of Wylie Strotbeck
The Family of McKenna Wetzel
The Family of Molly Worner

Recent Publications from Centers of Excellence

Harmonization of Post-mortem Donations for Pediatric Brain Tumors and Molecular Characterization of Difuse Midline Gliomas

Children diagnosed with brain tumors have the lowest overall survival of all pediatric cancers.  To address the paucity of tissue for biological studies, we have established a comprehensive protocol for the coordination and processing of donated specimens at postmortem. Since 2010, 60 postmortem pediatric brain tumor donations from 26 institutions were coordinated and collected. Patient derived xenograft models and cell cultures were successfully created (76% and 44% of attempts respectively), irrespective of postmortem processing time. Histological analysis of mid-sagittal whole brain sections revealed evidence of treatment response, immune cell infiltration and the migratory path of infiltrating H3K27M DMG cells into other midline structures and cerebral lobes. Sequencing of primary and disseminated tumors confirmed the presence of oncogenic driver mutations and their obligate partners. Our findings highlight the importance of postmortem tissue donations as an invaluable resource to accelerate research, potentially leading to improved outcomes for children with aggressive brain tumors. Read Full Publication

Dr. Monje-Deisseroth and her team at Stanford University recently published a paper detailing how gliomas are able to “hijack” the brain's communication system.

Published in  Nature: High-grade gliomas are lethal brain cancers whose progression is robustly regulated by neuronal activity. Activity-regulated release of growth factors promotes glioma growth, but this alone is insufficient to explain the effect that neuronal activity exerts on glioma progression. Here we show that neuron and glioma interactions include electrochemical communication through bona fide AMPA receptor-dependent neuron–glioma synapses. Read More

Congratulations to two of our Center of Excellence teams lead by Dr Javad Nazarian and Dr. Michelle Monje on their recent groundbreaking research publication. Due in part to increased access to post-mortem tissuethe teams were able to study a larger sample of DIPG tumors.  Diffuse intrinsic pontine glioma is a lethal pediatric brain cancer characterized by H3K27M histone mutation. Nagaraja et al. characterize a large cohort of rare primary tumors and normal pontine tissue to reveal active regulatory element heterogeneity dependent upon the histone variant and cell context in which the mutation occurs. Read More

Research Breakthroughs Resulting from Autopsy Tissue

Why Autopsy Tissue is Needed to Empower Research

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Swifty is a recipient of the GuideStar Gold Seal of Transparency

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