This is a story about a bunch of people all working together to accomplish something incredible. You’ve heard us talk for many years about how important it would be to have a tissue bank. After years of tireless effort, Drs. Miguel Reyes-Múgica MD and Cláudia M. Salgado MD PhD have built The Gavin Bailey Tissue Repository at the University of Pittsburgh Medical Center’s Children’s Hospital, with significant contributions from Travis and Cassandra Bailey, Nevus Outreach, the Morgan Family Foundation, and Dr. Bruce Bauer.
Certainly the most significant contribution comes from the hundreds of patients and their families that have donated their cells to the tissue bank. These donations of tissue are in the forms of parts of nevi excised during surgery and biopsy, and skin that is adjacent but that does not have a nevus. Also, in many cases there is blood, saliva and brain tissue from these patients. In a few cases, there is tissue from other parts of the body as well.
All these contributions from all these people are nothing short of priceless. “We have cell lines from 19 patients with central nervous system disease,” Dr. Reyes told us when asked to describe the growing tissue bank. “We have published six papers resulting from findings related to this tissue in the last 18 months, with more manuscripts that will be published soon.” At this writing, The Gavin Bailey Tissue Repository for Neural Crest Disorders contains over 500 individual tissue samples from 135 different patients, from eight different participating centers in the USA and abroad.
In a touching description, Travis Bailey, the father of Gavin, after whom the repository is named, tells his story: “Miguel and Cláudia spoke with us months before Gavin’s death.” Gavin had been diagnosed with severe symptomatic neurocutaneous melanocytosis (NCM), and had a poor prognosis. Travis and his wife Cassandra decided to donate everything, with only one restriction. “We asked Miguel and Cláudia not to cut Gavin’s hair.” He adds, “At the time, we had no idea that no one had ever donated tissue like this, and that Gavin was the first.
“They showed great respect for our son, and took the utmost care while removing his affected tissues. Days later, at Gavin’s wake, there were no signs that he had been touched, and no one had cut his hair.”
The story of how he raised the seed money for the tissue bank is inspirational. Ultimately, Travis raised over $20,000 to support the new tissue bank. This was matched by Nevus Outreach thanks to donors who understood the value of supporting this kind of endeavor. Now at $40,000, financial support of the tissue bank has grown to $130,000 thanks to the support of the Morgan Family Foundation. This has made it possible for the Northshore University Healthcare System, which facilitates the work of surgeon Bruce Bauer MD, to contribute the lion’s share of the biospecimens contained in the repository so far.
Dr. Reyes is quick to remind us that all this success does not come without cost. “Our work is going full speed and now we really need support. There is a staff of scientists and technicians at the tissue bank who carefully maintain the specimens, cultivate the cells, and carry out the research.”
“Everyone who has supported Nevus Outreach should be proud of this accomplishment,” Mark Beckwith, Chief Executive of Nevus Outreach, smiles. “ But we can’t sit on our laurels. There is work still to be done.” The tissue bank has resulted in a number of scientific discoveries and developments (Below).
“I tell my story,” Travis Bailey reflects, “because I feel that if someone would make another donation such as Gavin’s, it would not only help the tissue bank but also the advancement of medical science toward a treatment or cure for our disease.”
At the new tissue bank: (L to R) Cláudia Salgado, Taylor Scott, Tanya Kennedy, Travis Bailey, Paul Coleman, and Dipanjan Basu
Drs Miguel Reyes-Múgica and Cláudia Salgado built The Gavin Bailey Tissue Repository at the University of Pittsburgh Medical Center.
Related Articles (published in the last 18 months)
Skin of patients with large/giant congenital melanocytic nevi shows increased mast cells
Pediatric Developmental Pathology | May-June 2014
Neurocutaneous melanosis is associated with tethered spinal cord
Child's Nervous System | January 2015
BRAF mutations are also associated with neurocutaneous melanocytosis and large/giant congenital melanocytic nevi
Pediatric Developmental Pathology | Jan-Feb 2015
Nevospheres from neurocutaneous melanocytosis cells show reduced viability when treated with specific inhibitors of NRAS signaling pathway
Neuro-Oncology | September 2015
Amplification of mutated NRAS leading to congenital melanoma in neurocutaneous melanocytosis
Melanoma Research | October 2015
Insulin like Growth Factor 1-receptor signaling via Akt: a general therapeutic target in Neurocutaneous Melanocytosis?
Neuro-Oncology | (at press)