Passing of Patient/Advocate Erica Thiel

Our beloved friend Erica Thiel passed away recently on Saturday, January 8.  Erica was born on March 5, 1983, and was diagnosed with MPS I (Scheie Syndrome) in 2004 at the age of 21. She was such an inspiration and extremely helpful to many in the MPS community, through her tireless volunteer work in both family support and advocacy.

Throughout the years, Erica attended many WORLDSymposium Conferences, both in San Diego and Orlando.  At WORLDSymposium, she diligently attended medical and pharmaceutical presentations about novel treatments and trial updates. She studied the poster presentations, and met with top researchers and doctors including Dr. Chet Whitley, Dr. Jeanine Jarnes, Dr. Linda Polgreen, Dr. Elsa Shapiro, Dr. Emil Kakkis, Dr. Julie Eisengart, and so many more, actively learning all she could about her disease in a quest to educate and help others.

Erica was always available to speak with others within the MPS community, willing to offer advice and guidance to both patients and their families. She spoke at “Orphan Disease Day at NIH” (link here , Eric’s presentation begins at 1:05:05 which is 1 hour, 5 minutes into the video) from the platform in Bethesda, MD, about a patients view of the future of gene editing as a promising new potential treatment. She also was a strong advocate for better treatments for MPS in general, and specifically for adults living with the condition . She did all of this despite suffering from this debilitating condition herself, and would work tirelessly from her hospital bed to improve the lives of others.

Erica was a devoted daughter, sister, aunt, and friend. She had an engaging personality, and enriched the lives of all with whom she met. She was a long-time member of the U.S. MPS Society‚Äôs Adult Resource Center, and volunteered her time and efforts to Gene Spotlight, a non-profit dedicated to funding research and trials towards better treatments for rare diseases.  We thank Erica for all she did for the rare disease community, and will miss her dearly.

– Jennifer Thiel