Meredith Weiss, President

Meredith is an attorney in Texas and serves on numerous community boards. She is a married with three lively children who collectively love musical performances, beating each other at chess, and food adventures. Meredith’s devotion toward the Gorlin Syndrome Alliance started when her daughter was diagnosed with Gorlin Syndrome in 2011. She believes that love is a verb and is committed to improving the prognosis and ease of managing this disease.

Choose to be optimistic, it feels better. ―Dalai Lama XIV

Beth lives in Wheaton, IL, a suburb of Chicago. She graduated from the University of Miami (FL) with a Bachelor’s Degree in Music. She also completed an MBA with a concentration in Finance, as well as a Certified Financial Planner designation, both from DePaul University. Prior to becoming a Mom, Beth was a Second Vice President at a large financial institution based out of Chicago, IL assisting clients with their wealth management needs. She has served on various local boards, and is looking forward to her continued involvement with the Gorlin Syndrome Alliance. Her greatest joys and accomplishments include her husband Dan of 24 years, as well as her two children. Kyle (high school freshman) and Cole (6th grade) keep Beth busy on most days volunteering at school or cheering on their activities, which include chess, baseball, football, theater & all things musical. Beth is hopeful for better, less invasive treatments, and ultimately a cure for Gorlin Syndrome, which affects her youngest son, Cole.

Samuel Breneiser

Sam has been a healthcare executive for the past 20 years. He has been married for 24 years and spends his time cooking when not working. Sam is committed to the Gorlin Syndrome Alliance because of his three affected relatives, whom he loves very much and would do anything to help along with others affected with Gorlin Syndrome.

At the end of the day people won’t remember what you said or did, they will remember how you made them feel. – Maya Angelou

Roni Rubenstein

Roni is a lawyer by training, having worked as a litigator on Wall Street and as an Assistant District Attorney in the Manhattan District Attorney’s office. For the past decade, Roni has been involved with a variety of nonprofits, specifically in grant making, strategic planning and governance. Roni is married with three adult children. She serves on the Gorlin Syndrome Alliance Board because of an affected family member. Roni is committed to advancing the support and treatment of individuals with Gorlin Syndrome, particularly in this moment of tremendous scientific promise.

Jim is a professor of oral and maxillofacial surgery at the University of Minnesota, where Dr. Robert Gorlin spent the vast majority of his professional career. He had many opportunities to work with those afflicted by the syndrome through Dr. Gorlin’s referrals and continues his service with the U of MN Craniofacial Anomalies Clinic. His primary focus is providing diagnostic and surgical training and education for oral health care providers to be aware of the symptoms and treatment of recurrent keratocystic odontogenic tumors, which are a primary component of Gorlin Syndrome. He is married with 2 adult children. He has served on multiple boards and for many organizations both with governance and philanthropy.

Kathy Rainen

Honorary Board Member

Kathy, a former Employee Benefit Consultant, is a director at Rainen Companies, Inc., a former trustee of Baker University, and former board member of Junior League of Kansas City, Junior Women’s Symphony Association and March of Dimes. She is a married mother of two adult daughters, one of which is affected with Gorlin Syndrome. Kathy’s passion is for continued research for Gorlin Syndrome and providing support to those who have Gorlin Syndrome, as well as those who are affected by it.

Kevin Gullatt, Treasurer

Kevin is the Director of Risk Management for a private family in Fort Worth, TX. He is a married father of twin sons, who love baseball, soccer and anything involving the Texas Aggies or TCU Horned Frogs! Kevin’s wife and one of his sons are affected with Gorlin Syndrome. Kevin wants to do whatever he can to make living with the condition better for his family and anyone else who is affected.

We know what we are but know not what we may be. -Wm. Shakespeare

Michael Rainen

Mike is Chairman of Rainen Companies, Inc., and a married father of two adult daughters, one of which is affected with Gorlin Syndrome. Mike serves on the board to help others and to work toward ending Gorlin Syndrome and basal cell carcinomas.

Jenni Werkmeister

Jenni has worked in the healthcare industry as support staff for more than 20 years and been a member of the Gorlin Syndrome group for 17 years. She is married and a “mom” to a spoiled four-legged dog. Jenni chose not to have children due to Gorlin Syndrome. Jenni is a Gorlin Syndrome survivor who dances with it daily. After being diagnosed with her second brain cyst in 1999, she discovered there was no support for Gorlin Syndrome. Jenni is one of the pioneers who helped to create the Gorlin Syndrome Alliance and loves to tell others that they are rare but not alone.

I have Gorlin Syndrome, it doesn’t have me. – Jenni Werkmeister

John Wood

John works in property management in the historic neighborhoods of Columbus, OH for the past 12 years. Prior to that, he was a high school social studies and Spanish teacher. John married another teacher and has two teenage children, a son and daughter, who both enjoy pole vaulting. Since being diagnosed with Gorlin Syndrome in middle school, John has had 1,000 plus basal cell lesions removed, as well as a handful of jaw cysts and teeth over the past 35 years. Knowing what he’s been through, a thousand plus surgeries later, and knowing that anyone who has Gorlin Syndrome could just as easily be his son or daughter, John has great motivation and passion to support the cause of finding a Gorlin Syndrome cure and helping those affected along the way.

For the mouth speaks what the heart is full of. -Matthew 12:34

Stacy Bissell is a Visual Effects Producer. Her interest in the Gorlin Syndrome Alliance started when her daughter was diagnosed in 2019. Stacy lives in San Francisco with her husband Chris, son Silas, affected daughter Rowan, and their dog Calamity. She is committed to supporting families affected by Gorlin Syndrome and hopeful in the future of medical advances to mitigate the syndrome experience.