Close your eyes and think back to the moment you heard of your or a loved one’s diagnosis with Gorlin syndrome (GS)?  The initial shock, concern, uncertainty, and fear you felt in those early moments and days.  Add to this getting the news mid-pandemic and that’s how our family began our GS journey.

My name is Taylor and my son, now three-years-old was diagnosed in 2020.  The sense of isolation, never ending questions and realization that this is such a rare disease was completely overwhelming.  Like most people today, I hopped on the internet to see what I could learn about GS and hopefully find another family or two who were facing the same issues.  That one internet search changed everything.  I didn’t find one or two families; I found my tribe.

The Gorlin Syndrome Alliance’s (GSA) mission is to thoughtfully support, comprehensively educate, and aggressively seek the best treatments and cure for those affected by Gorlin syndrome.  I couldn’t say it better myself.  The GSA is comprised of more than 3000 members who either have GS and / or care for and about a loved one with this rare disease.  They immediately reached out and provided information about up-and-coming webinars, newsletters, events, and invited me to a parent’s support group call.  It was a Zoom meeting I will never forget.  To be face to face (even virtually) with others sharing the same struggles and worries, and parents who can provide guidance or lend an ear is priceless.  Two parents, who also happen to be GSA Board members, captured my soul with their honestly and transparency:

“Rare is only rare until it happens to your family, then it becomes your new normal.” – Stacy Bissell, Vice President of the GSA, mother of a child impacted by GS,

“While we didn’t choose the diagnosis, we are thrilled to be a part of this positive and supportive community.”

–Meredith Weiss, President of the GSA, mother of a teen with GS.

The GSA was and is there when my family needs them the most. Now I am asking YOU to be there for other families like ours! Supporting patients and their families is critical – will you stand with us?  Your donation will provide support, education, and allow the GSA to fight for better treatments and a cure for Gorlin syndrome.

 

Please answer the call and give to the GSA.  Donating is quick and easy!  Simply mail a check to the Gorlin Syndrome Alliance, PO Box 4, Reading, PA 19607, visit their website HERE, or call 627.689.6443 to donate over the phone.

With deepest gratitude for your support from my family to yours,

Taylor

P.S. Donations of all sizes make a difference!  If you have contributed in the past and are able, please consider increasing your gift.  Thank you very much!