MEMBERS OF THE BOARD

All of our board members are volunteers.  Your generous donations are only used to fund Program Development. 

Bill Mahr – Executive Director

Bill is married and has 3 children and 7 grandchildren. One of his grandchildren, Abby, has the 7q duplication. She was diagnosed when she was about 3 years old. He and his wife Lou Bayly have been heavily involved in assisting her parents with her care and ongoing therapy, and we continue to learn more and more about the duplication.

After 20 years in the Army in the Environmental Sciences field, Bill retired as a Lieutenant Colonel in May of 2000, spending 6 of those years in Germany and Saudi Arabia and the rest here in the US. He then moved onto working for a medical non-profit foundation until January 2017.

His work at the foundation included conducting scientific and ethical reviews of research proposals; budgeting; completing grant applications; engaging with researchers, clinicians, and scientists at NIH, universities, and medical centers; writing statements of work for contracts; program management; and finally culminating as Deputy Chief Administrative Officer in the military’s only cancer center based at Walter Reed National Military Medical Center in Bethesda, MD.

Now that he is fully retired, he hopes to bring some of his experience to the Executive Director position for the benefit of Duplication Cares.

 

Patricia Scott – Finance Director

Tricia Scott is the parent to a child with 7q duplication. Like many other parents, she discovered her daughter’s disorder after she missed many milestones, and requested testing. And, like many other parents, Tricia was told her daughter was autistic. Something did not ring true for her, knowing her daughter as she did, so she kept fighting until the microarray testing was offered. Of course, the testing showed 7q11.23 Duplication Syndrome. From there she found Dr. Carolyn Mervis, and the 7q duplication study performed at the University of Louisville.

When the Scott family made their first trip to Kentucky, to take part of the study, Tricia was able to meet multiple families all dealing with the 7q dup. This is where she learned about the Family Support Group, and how many families were getting a diagnosis of Autism, instead of the proper diagnosis for 7q11.23 Duplication. Though our children live on the spectrum in many ways, there is validity in a proper diagnosis, and treatments that help our children. Within 6 months of that session, Duplication Cares was born. Tricia founded Duplication Cares in March 2010. From there she reached out to other moms, who were already running a Family Support Group. The four families met at the University of Louisville later that year, to create a structure for Duplication Cares.

It’s been over six years now, and both the Family Support Group and Duplication Cares have grown. Tricia is looking forward to the coming years, where we work toward our missions. We have a Mission to support families, through our Family Support Group, who also creates our Yearly Newsletter… but also a Mission to work to bring this disorder more into the light, so children are quicker to receive the proper diagnosis and treatment.

 

Paul Garrity – Technology Director

Paul and his wife live in New York City, with their two sons, one of whom has the 7q11.23 duplication. Their Dup7 son was not diagnosed until he was 13 as the syndrome had not yet been identified by researchers.  Prior to that, he was thought to be in the Autism spectrum. It was a revelation to finally have a proper diagnosis that actually made sense. It was many more years before Paul became aware of this support group and organization, and he jumped in quickly to help.

With a background in theatre production and sound design, Paul has worked for over forty years in the field of architectural consulting for the design of performing arts facilities, specializing in stage technology and audio-video systems, participating in the design of many theatres, conference centers and planetariums around the world. His wife and sons all share Paul’s passion for the performing arts.

At Duplication Cares, Paul is the first contact for new members of this community, and is the contact for any technical issues relating to the duplicationcares.org website or our support groups on Facebook, to help us all learn from each other and from our contacts with leading researchers in the field.

 

 

Lainie Gutterman – Director

Lainie and her husband Scott live in New York City with their two children. Their oldest, Ian, was diagnosed with autism spectrum disorder (ASD) at two years old. The Guttermans learned that their daughter Greenlee has 7q11.23 duplication (de novo) while she was in utero through microarray. She is 8 years old and still non-verbal.

Prior to becoming a stay-at-home mom, Lainie was a founding partner in a boutique public relations firm specializing in food, wine and spirits. She now dedicates her time to her family. In her spare time, she enjoys writing, meditating and riding her Peloton.

 

OTHER KEY LEADERSHIP

Jennie Dopp – Special Projects Coordinator / Executive Director Emeritus

Jennie resides in the foothills of the beautiful Rocky Mountains in Utah. Jennie is married to Ryan, her high school sweetheart, and together they have four beautiful children. They knew their second child, Jackson, had brain structure anomalies in utero. Once he was born, they continued to search for treatments for his “delayed development” and the challenges he faced throughout all of his early life. It wasn’t until Microarray testing became available when Jackson was seven that he was finally diagnosed with 7q11.23 Duplication Syndrome. From that time forward, Jennie has been an advocate for not only Jackson and the 7q11.23 Duplication community, but for all areas of the special needs world. In addition to facilitating the Duplication Cares Program, family support, and research coordination, Jennie has twice been the Board Chair for the Utah Parent Center and a seven year member of the Board of Directors for the Parent Center. Prior to her work with Duplication Cares, Jennie was a manager with the Marriott Corporation. Jennie holds a degree from Weber State University. In her spare time, Jennie enjoys reading, spending time with her family and friends, serving in her church, enjoying nature, movies, and of course, chocolate! Jennie hopes her service and her many years of experience with 7q11.23 Duplication will benefit your family.