It’s Michael’s birthday week! To celebrate I want to share an AMAZING story with you that I still can’t believe happened.
In the past several years I have been frequenting pediatric cancer conferences (should have been a STEM major not a CPA, but who knew?). At a meeting in August, the question discussed was how long could a child’s donated tissue remain viable after death in order for scientists to start cell lines and mouse models with the tissue. Not an easy topic. Creating cell lines and mouse models helps researchers understand the biology of tumors and develop new treatments.
A renowned researcher was presenting the results of 15 post-mortem donations that are part of his research. He displayed a chart listing the viability of each donation, including demographic data. As my eye scanned the chart, I noticed one donation in particular … male, 15 years old, medulloblastoma, Illinois, high cell viability, cell lines AND mouse models started! A light bulb went off for me and then the researcher’s assistant confirmed what I was thinking.
“That one there, that’s your boy.”
As I noted in my last post – Michael’s gift is still making an impact every day!
My heart stopped. I turned to my husband, and in a mixture of joy and grief, time froze. Mikey lives on in this research lab as cell lines, in mouse models and is informing and changing the way medulloblastoma is being treated today!
I want every family who has suffered the loss of a child to this awful disease to have the experience of comfort and hope we felt that day.
Currently, only 1 to 5 percent of families are donating post-mortem brain tumor tissue. Sadly, when surveyed after the loss of a child to brain cancer, 90 percent of families said they would have donated if asked.
Currently less than 5 percent are donating, and yet 90 percent of families would have donated if asked!
That’s the broken piece that Swifty Foundation will work to fix with the programs funded by this year’s Annual Appeal.
This year our goal is to raise $150,000 to fund a first-ever Tissue Navigator staff position at Lurie Children’s Hospital of Chicago
For today, I want you to know that because of his tissue donation, Michael’s cells are currently living on in three labs and findings from the resulting research have been published in several scientific journals. In addition, Michael’s gift has completely changed the research focus of two of those three labs!
Here’s the conclusion from one such article published in Cancer Cell: “Further studies integrating emerging technologies such as long non-coding RNA, proteomics, and histone modifications may allow an even more refined description of the medulloblastoma landscape; however, the large cohorts of frozen tissue required for these studies are presently not available.”
Not enough tissue?! We are asking for your assistance to make sure this is NOT the case in the future.
Together Toward Hope!
Patti Gustafson
