Paul’s Speech at the Genomic Medicine Meeting in Silver Spring, Maryland

This is the speech I gave at the Genomic Medicine Meeting in Silver Spring, Maryland on May 2, 2017. I was invited by Duke University’s School of Medicine’s Center for Applied Genomics and Precision Medicine and The National Institute of Health to tell “Angela’s Story” It was not an easy story to tell but it puts a human face on the research these doctors do and shows them that their pie charts and bar graphs and statistics are real people with real names and real families. My goal was and is to inspire them to work harder to conquer Stevens Johnson Syndrome, adverse drug reactions and other genetic diseases.

4 thoughts on “Paul’s Speech at the Genomic Medicine Meeting in Silver Spring, Maryland”

  1. My 14 year old niece succumbed to SJS March 30, 2017 at the age of 14. She is African American. Had taken amoxicillin for strep throat and the outcome was SJS. Treated at Mass. General Hospital in Boston, 90 miles from her home for over 20 days, contracted MRSA while hospitalized. We are all devastated.

    • Dear Scharlene,

      I am so sorry for the loss of your niece. Please pass on my condolences to her parents. My wife and I are still reeling from the death of our daughter Angela 2 years after her death. It’s still unbelievable to us. Do you have any more information about your niece’s death? Perhaps a newspaper article or an obituary that mentions SJS? I would like to post it at this website and on the SJS/TEN Facts and Information Facebook page. The more awareness we can spread about this devastating disease the better. If nothing has been written, I would like to share your story in your words with the world about what happened to your niece. My wife and I just returned from Nashville where we met with the SJS research team at Vanderbilt University Medical Center. SJS Research was started there in December 2016 after we donated $22,000 in donations we had received after Angela’s death. We are pleased to report that the research team headed by Dr Elizabeth Phillips is excited by the progress they have made. We also learned that the Angela Anderson Memorial Research fund has now reached over $35,000. You mentioned that your niece died in Boston. Do you live near there? My nephew and his wife just moved there and my roommate from my Air Force days live there. We hope to visit out there sometime in the future. It would be nice to meet you and your niece’s parents.

  2. Wow. Heartbreaking. It is a honor to know Paul and Wanpen. Everyone has a story- let’s ALL take time to listen. Really listen. I am so, so sorry.

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