Last December 28th my 22 year old daughter Angela died of a rare condition called Stevens Johnson Syndrome. I took her to ER on Christmas morning with an eye infection fever and rash. She was dead 3 days later. At her visitation and funeral we accepted donations for research in lieu of flowers. We received nearly $10,000 at that time. My son had a benefit concert for her in February and we received another $5,000
I then began my search for a place to send the money to. I went on line and found the Stevens Johnson Foundation http://sjsupport.org/ . I called them and talked to the mother of a child that had survived SJS twice. I asked her about research for SJS. She said that there was no research being done in the United States. She said that the Foundation’s purpose was to spread public awareness and she suggested that we send our money to one of the burn centers that treats SJS patients such as the Shiners’ Hospital in Boston. She said that the Foundation didn’t need that much money but we made a small donation to them anyway. I was disheartened that no research was being done on the disease that took my daughter
I went back online and found that On March 3-4, 2015, the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) had sponsored an international workshop - Research Directions in Genetically-Mediated Stevens-Johnson Syndrome/Toxic Epidermal Necrolysist https://www.genome.gov/27560487/research-directions-in-geneticallymediated-stevensjohnson-syndrometoxic-epidermal-necrolysis/ At that site was a list of all the participants of that workshop. I copied the names of the 68 participants that were in attendance, Googled their names for their email addresses and phone numbers. I then began contacting as many of them as possible. I first heard from Dr. Teri Manolio from the NIH (National Institute of Health). She told me that she did not know of anyone doing research in the U.S. She suggested that I contact doctors in Southeast Asia where some research was being done. I did contact researchers from 3 countries but found that they either weren’t interested in the money or that the money would only be used to benefit research in their own country.
My first hint of research being done in the U.S. was in an email from Dr. Elizabeth Phillips of Vanderbilt University Medical Center: in an email to me, she said,
“On a positive note we are actively gathering researchers within the United States and internationally to develop a multidisciplinary and active research network. This is happening currently as we have been surveying across the United States to get a coordinated effort over the last 2 weeks. There are potentially new drugs of interest that can be trialed in the treatment of SJS/TEN and this type of infrastructure will be absolutely necessary to study and effect change in a disease as devastating as SJS/TEN.”
In subsequent emails from Dr Phillips I received a preliminary proposal for her intentions to start SJS research. She also invited us to visit her at VUMC. In May, 2016 my wife, my son and I headed to Nashville to meet her. We were surprised when we got there that we were met with Dr Phillips and team of five doctors in a conference room. They proceeded to explain what kind of research they would be doing for the next hour and a half. They then gave us an extensive tour of their labs. At that time we had accumulated $16K in donations. It was an amount we thought insignificant in the world of research where millions of dollars are spent. But they were impressed by our endeavors and said, “It’s a start!” After that, our son Tim opened up a Go Fund Me account on Facebook and I opened one also and donations continued to roll in.
On December 13, 2016, nearly one year since Angela’s tragic death we met with Dr Phillips again and presented her with a check for $22,000. This is an accumulation of all of the donations we have received from family, friends and concerned strangers. $22,000 is also a significant number because it represents $1,000 for each year of Angela’s shortened life.
More money is still need to continue the fight against this dreadful disease. If you would like to add your donation to continue this research you may donate at https://vanderbilthealth.com/sjsresearchfund.
Left to Right-
- Simon Mallal, M.D. – Professor and Executive Director, Centre for Clinical Immunology and Biomedical Statistics at Royal Perth Hospital and Murdoch University; Professor and Director, Institute for Immunology and Infectious Diseases Murdoch University; Major E.B. Stahlman Chair in Infectious Diseases, Professor of Medicine and Pathology, Microbiology and Immunology, Director, Center for Translational Immunology and Infectious Diseases, Director, Center for AIDS Research, Vanderbilt University School of Medicine
-Elizabeth Phillips, M.D. - Professor of Medicine & Pharmacology, Director of Personalized Immunology, Oates Institute for Experimental Therapeutics, Vanderbilt University; Clinical Professor, School of Pathology & Laboratory Medicine, University of Western Australia
-Katie White, M.D. Ph.D. – Infectious Disease Fellow, Physician Scientist Program at Vanderbilt University
-Sarah Garon, M.D. - Clinic Fellow, Allergy/Pulmonary & Critical Medicine at Vanderbilt University
-Elizabeth Ergen, M.D. - Dermatology Resident at Vanderbilt University
-Kristina Newgarden, RN, BSN – Research Nurse Specialist at Vanderbilt University