Ever since I started this virtual community eighteen years ago (in May 2008), I have never needed to ask this community’s membership for even one dollar of support for badly needed research on SCLS.
As many of you know, I recruited Dr. Kirk Druey to carry out laboratory biomedical research on SCLS, and he was able to do it very much on a part-time basis with very modest annual funding that he obtained from his employer, the U.S. National Institutes of Health.
But now that Dr. Druey has retired without recruiting anyone to continue doing research on SCLS funded by the U.S. government, and especially given the major cuts that have been made to the NIH’s research budget by the current administration, I feel strongly that the time has come for us to support research on SCLS that any reputable investigator in a top private hospital and/or medical school is willing to carry out.
To lead by example, a couple of months ago I set up a research fund at Yale University to help support the work of Prof. Dr. Richard Pierce, a Pediatric Critical Care Medicine physician who combines laboratory research with hospital practice, who has already published several articles on SCLS, including one in joint authorship with Dr. Druey, see https://medicine.yale.edu/profile/richard-pierce/ and https://pubmed.ncbi.nlm.nih.gov/?term=%28Pierce+R%5BAuthor%5D%29+AND+%28capillary+leak+syndrome%29&sort=
The Pediatric Fund for Biomedical Research on Systemic Capillary Leak Syndrome (SCLS) at Yale University is advancing research and awareness efforts focused on children with SCLS as well as adults first diagnosed with SCLS as children.
The funds help support nationwide and international outreach to better define how pediatric SCLS presents, how often it is missed, and what treatments work best. They also support laboratory studies testing patient blood samples to identify harmful antibodies that may trigger sudden blood vessel leakage, a discovery that could explain why attacks often follow viral illnesses.
In parallel, donations help expand educational materials for physicians and families, so children can be diagnosed earlier and started on effective treatments that prevent repeated ICU admissions. Every dollar is aimed at reducing preventable suffering while moving closer to targeted, pediatric‑specific treatments.
To my knowledge, Dr. Pierce is the only investigator currently doing research work at the frontier of knowledge on SCLS, and while his focus is children with SCLS or adults who were first diagnosed with SCLS when they were younger than 18 years old, that should not deter anyone from supporting his work for two reasons.
First, it’s hard enough to live with SCLS when one is an adult, so imagine how much worse it must be for young patients and their families to live with that diagnosis since childhood! The time has come for some research funding, time and effort to be devoted to children with SCLS. (Incidentally, in this virtual community we have at least a dozen parents or caregivers to children with SCLS.)
Second, there is a great deal that SCLS in children may be able to teach us adults. For example, according to the existing medical literature on more than 30 pediatric cases from around the world, children with SCLS do not have an MGUS whereas most (about 80%) of SCLS adults do, so why is that and what are the implications?
Another example: there are unconfirmed reports that at least some children with SCLS “outgrow” the disease in adulthood, so if that could be confirmed, then research might be able to identify what it is that led to that hopeful outcome in some former children versus in others who did not “outgrow” it.
If you would like to join me in supporting cutting-edge research on SCLS, please visit the page https://givetoday.yale.edu/campaigns/67229/donations/new?designation=41335
Please give as generously as you can.
Arturo