Dear GSA Community,

Spring is here, and thanks to you, hope is blooming!

Every act of generosity—your wisdom, support, and care—creates ripples of change for those facing a new diagnosis. Here’s proof of the difference you’re making:

🌟 A Doctor Reached Out for Help
Last week, an oral surgeon contacted us—someone we had never met. A patient had just come through their office showing signs of Gorlin syndrome. The doctor wanted to be prepared, armed with the best resources before the patient’s next visit. Because of you, we had the answers ready.

🌟 A Family Found Community
A dermatologist recently referred a family to us. Thanks to you, we could connect them with educational materials, community groups, and even research opportunities. This family doesn’t have to face their journey alone—because you’ve helped build a strong support network.

Every act, whether it’s participating in research, donating, sharing a kind word or the wisdom of your experience, moves us closer to a world with better treatments and more hope.

News from around the GSA Neighborhood

🎉 Meet Our Youngest Rare Disease Day Champions!
A huge shoutout to our smallest advocates who raised awareness about Gorlin syndrome in their schools on Rare Disease Day! With support from parents and teachers, they educated classmates and inspired action. We are so proud of them and can’t wait to see what they do next!

⛷️ Skin Up, Roses Down:

A Joyful Success!

Big thanks to the Hodge family and friends for hosting a ski fundraiser for the Gorlin Syndrome Alliance and the Cystic Fibrosis Foundation. The event was filled with laughter, fun, and meaningful support. We are deeply grateful!

📢 AAD Conference Recap
GSA staff, alongside our medical and scientific advisors, joined over 20,000 attendees at the American Academy of Dermatology’s Annual Meeting. Key takeaways:

• Exciting advancements in skin cancer treatments and combination therapies are on the horizon.
• Daily sun protection is essential for everyone—rain or shine! Make sunscreen a habit.
• Experts confirm that superficial radiation therapy (SRT) is NOT recommended for individuals with Gorlin syndrome, as it may accelerate tumor growth.

Ways to get Involved

🔬 Clinical Trial – Enrollment Open!
Check your email for the latest updates. Don’t miss this opportunity to advance research.

🎟️ Conference Registration – Time is Running Out!
The countdown is on! Register now and book your hotel by XXX. Don't forget to explore our available scholarships. Plus, once you register, you’ll receive an exclusive link for discounted Disney Parks passes!

🧬 Join the GSA Patient Registry (GSAPR)
Your story fuels research. The GSA Patient Registry helps track Gorlin syndrome over time, giving researchers the data needed for medical breakthroughs. If you or a loved one has Gorlin syndrome, help shape the future—enroll today!

Thank you for being part of this incredible journey. Your support is changing lives every day!

With gratitude,

Meredith Weiss

Executive Director
Gorlin Syndrome Alliance

P.S. If you ever wish to share news from your Gorlin syndrome community, ask a question, or suggest a topic of interest, please reach out to us at info@gorlinsyndrome.org