Board of Directors

All of our Board Members are volunteers.  Your generous donations are only used to fund Program Development.

Jennie Dopp – Program Director

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.

 

Patricia Scott – Finance Director

Tricia Scott is the parent to a child with 7q dup. 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. Mervis, and the 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 7qDup. 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.

 

Jane Shenkarek – Board Member, RN and Parent Advocate

Jane joined Duplication Cares as a parent member in February 2013 when their youngest son was diagnosed with 7q11.23 duplication at the age of 3 years.  Drew had various delays, but most prominent was his severe expressive speech delay later confirmed as Childhood Apraxia of Speech (CAS).  Jane quickly became an active member, advocate and friend within our online community of Duplication Cares.  She completed her Bachelor degree of Nursing Science at the University of Alberta and has been a Registered Nurse in Disability Supports & Services for many years.  Jane has taken on a role in assisting Duplication Cares educate, advocate and bring awareness to 7q11.23 Duplication.  Jane is currently acting as the Canadian Representative for Duplications Cares and Board Member.  She is also involved with the Rare Disease Foundation (Canada), Childhood Apraxia Society of Edmonton (Board Member) and previously held a position as the Duplication Chair with the Canadian Association of William’s Syndrome (2015).  Their family resides in Edmonton, Alberta (Canada) where they enjoy spending time with their family and friends.  In Jane’s view, the diagnosis of 7q11.23 duplication was a changing point in her life as it brought a new perspective, meaning and purpose as a mother and nurse.  “Drew has taught me more about patience, encouragement and the power of play like no other.  He is perfect in our eyes.”