History of the Gorlin Syndrome Alliance

The Gorlin Syndrome Alliance, formerly the BCCNS Alliance, evolved from the humble efforts of three determined patients and their desire to connect with others who had the same rare syndrome. It was through a series of cascading connections, referrals, and sheer compassion to help other Gorlin syndrome patients that this one-of-a-kind and invaluable organization was born.

In 2000, Jenni Werkmeister and her mother, Barb Rogers-Oberski, wanted to start a support group for people with Gorlin Syndrome in the United States. Looking for some guidance, Jenni and her mom contacted Robert Gorlin, M.D., at the University of Minnesota School. Dr. Gorlin is credited with helping to discover, identify, and describe Gorlin syndrome, also known as nevoid basal cell carcinoma syndrome. Dr. Gorlin referred Jenni and her mother to Jim Costello, the leader of a Gorlin syndrome patient advocacy group in the United Kingdom.

After talking with Jim, a new connection was introduced to Jenni named Ren Bradley, an affected Gorlin syndrome patient with an affected daughter, in the US. Reaching out to Ren, she learned from him that he knew of a woman in Ohio who was also trying to form an organization that would unite individuals and their families affected by Gorlin syndrome. Jenni located that woman, who ultimately turned out to be Kristi Schmitt Burr, in Burton, OH. Kristi, affected with Gorlin syndrome as well as her son, Hans, was in fact forming a Gorlin syndrome support group with the help of her long-time family friend and Ohio attorney, Bill Ginn. The organization was named the Basal Cell Carcinoma Nevus Syndrome Life Support Network and was incorporated in February 2000. Soon thereafter, Jenni and Kristi learned about another Gorlin syndrome patient, Bud Caruso in Illinois, who was starting a website called the Gorlin Advocate. They reached out to him to combine efforts and the seeds were planted.

That September, Bud, Kristi and Jenni met face-to-face in Cleveland for their first planning meeting. The three talked about formalizing the organization and setting goals. They brainstormed various ways the organization could support the Gorlin syndrome community. Ideas like creating care packages for young children, to raising awareness in the medical community, to connecting patients on the internet through chat rooms, were all discussed.

Later that year and armed with a purpose, the trio and their families traveled to Manchester, England to attend the UK’s Gorlin Group first annual meeting. Everyone left that meeting with excitement and determination to replicate this invaluable experience for patients and their families in the United States.

In April 2001, the formalized BCCNS Life Support Network held its first member meeting in Aurora, OH. Attendees met other affected individuals and knowledgeable physicians. For some, it was the first time they ever met someone with the same diagnosis. It was life-changing. Together, the attendees learned from talks by medical professionals about the syndrome, related treatment options, clinical trials and how to cope with a rare disease. The outcomes for patients, their families, and medical professionals from this first meeting went beyond anyone’s expectations. The amount of information that was shared and the sense of camaraderie among the attendees inspired Kristi and this core team of volunteers to organize similar small meetings in other areas of the country. And the Network flourished.

During the early years, the BCCNS Life Support Network focused on developing new and creative programs to help unite the community and foster a sense a security among members and their families. A program entitled “Band Aide Buddy” encouraged affected children to create their own plush animal companion to take with them to medical procedures and hospital stays. Another program, entitled “The Sunshine Club,” sent cards to participating members for holidays and surgeries, reminding members that they were not alone. Slowly and surely, the Gorlin syndrome community began to grow with the help of the Network. Technology and the internet also played a significant role in bridging the gap between patients, medical professionals, researchers and the organization. Thanks to all these efforts, the organization has grown from just a few members to well over 900 affected families.

In 2018, the organization experienced a shift in leadership with the retirement of Kristi Schmitt Burr, the organization’s first Executive Director and founder. With the change in leadership, the Board of Directors leveraged the opportunity to change the organization’s name and logo to the Gorlin syndrome Alliance to better reflect its purpose. The term ‘alliance’ emphasizes the union that formed between patients, the medical community, the pharmacological industry and the hope for a cure. The Gorlin syndrome Alliance remains committed to its roots of providing strong support, both emotional and informational, to our members but also recognizes the power of science and research in making a difference in patients’ lives.