The 2019 National Conference was a huge success!! With over 105 people registered, the hotel was filled with patients, caregivers, faculty, pharma execs, and staff. Nearly 60% of the those affected with Gorlin syndrome never attended a national conference before! You could really feel how the GSA touched the lives of our members in significant ways. Members were moved when hearing about the different paths patients took to arrive at their diagnosis. Attendees were inspired to meet each other and understood the courage it took to attend the meeting and make themselves vulnerable. Each story was unique to each person, but the unifying bond was the same for everyone – support, education and finding a cure.
Friday’s educational lectures were loaded with useful information about the importance of the Gorlin Syndrome Registry, protocol for care, building your care team, basal cell carcinomas, and jaw cysts. Click here to view the educational programming that was livestreamed during Friday’s lectures. After a full day of sessions, many of the attendees hopped on a trolley and spent the evening on a tour of historic Philadelphia and a run up the iconic “Rocky” steps at the Philadelphia Art Museum.
Saturday’s sessions began with updates on current and upcoming clinical trials, followed by the latest in research, and then a personal story of resilience from an affected member. The afternoon sessions featured multiple informative sessions addressing many of the issues our members are dealing with on a regular basis -radiation exposure, diet, insurance, other syndrome symptoms, and genetics.
Sunday’s programming engaged our members in an open-forum discussion about how the GSA can better serve our members and be a more impactful organization. There were a ton of great ideas shared during this discussion, and a few members graciously stepped up to volunteer in some leadership positions, for which the board and staff were so grateful. Attendees were assured that all these great ideas will be considered and/or included in the future. Everyone left with a positive feeling that we may be small, but we are MIGHTY together.
Below are the educational conference presentations that GSA has been granted permission by the speaker to share with our members.
Why is the Gorlin Syndrome Registry so Important? – Joyce Teng, MD, PhD
Patidegib Gel Clinical Trial for BCC Prevention – Jean Tang MD, PhD
Other Gorlin Syndrome Symptoms – Jean Tang, MD, PhD
Understanding Radiation & Self-Advocacy – Julie Breneiser
Eating for Longevity & Quality of Life – Cassidy Moore, MS, RD
Tips for Navigating the Insurance Jungle – Sam Breneiser
What are People Saying About Gorlin Syndrome? An Analysis of 150,000 Publicly Available Social Media Posts – James Solomon, MD, PhD
Gorlin Syndrome Genetics-Accepted Theory & Variations – James Solomon, MD, PhD
Nothing About You Without You – Camilla Krogh Lauritzen
Gorlin Syndrome: What it Means to You & Your Family, Current Protocol for Care & Creating Your Care Team – Jean Tang, MD, PhD
Presentations To Come
Facts about BCCs in Children & Adults, Surgical & Non-Surgical Treatments – Elizabeth Billingsley, MD
Keratocystic Odontogenic Tumors (KCOTs) Diagnosis, Treatment, Surgery and Lifelong Concerns & Follow-Up – Nolan Jenkins, DDS
Looking From the Outside In – Biomarkers in Gorlin Syndrome – Addy Alt-Holland, PhD