Parent Advisory Board

  • Tushar Puthran

    Tushar Puthran has a background in providing software solutions for financial institutions. He graduated from Rutgers Business School with a degree in Financial Analysis. His daughter was diagnosed with a MEF2C variant at the age of two. She needed help with all activities, and through therapy their family sees improvement every day. Tushar is hopeful that by supporting medical research and development, there will be help for his daughter in the near future and that she will be able to lead an independent and happy life.

  • Gabriel Chang

    Gabriel Chang

    For the past 20 years, Gabriel has worked in various roles in software engineering, product management, and team leadership at Nvidia, Nextdoor, Wonder Workshop and other tech companies in the San Francisco area. He is particularly passionate about education, and has dedicated himself to helping young children develop the skills they need to thrive in today's rapidly changing world. As a father of two, including a son with MHS, Gabriel is passionate about supporting clinics to facilitate and advance research for effective treatments and a cure.

  • Audra Kimmet

    Audra is mom to 3 children, the oldest WIlliam, is diagnosed with a MEF2C mutation, Autism, Global Developmental Delay, and CVI, along with complex febrile seizures when he was younger. Audra is a Scientist/Engineer with her Masters Degree in Forensic Science and Law, and works for Procter & Gamble. She and her husband (also an engineer) enjoy learning all of the unique characteristics of Will, and joke that he is their very own science experiment in life. Will is a happy sensory seeking red head with giggles that are infectious enough to make anyone smile on a bad day.

  • Kelly Olson

    My name is Kelly Olson, and I am a mom of 3 girls. My youngest daughter Teegan is diagnosed with a MEF2C mutation. I have a Bachelor’s Degree in Child and Family Studies. For over 10 years, I have worked in the school district working with many different children and their development. I am now a stay-at-home mom caring for my daughters and bringing Teegan to many appointments and therapies. I am excited to be a part of this parent advisory board and looking forward to the research for a treatment for MEF2C.

  • Stephanie Fitzpatrick

    Stephanie Fitzpatrick is a Healthcare Administrator in the US Air Force. She has a Master of Business Administration degree with a Healthcare Administration concentration from the University of Colorado. Her daughter, Demi was diagnosed around the age of two with a MEF2C mutation while they were stationed in the United Kingdom. Since then, Stephanie has taken an active role in developing a worldwide list of MEF2C patients to assist with parent networking as well as research efforts. She also is passionate about raising awareness and advocating for additional resources for special needs children within the military community. Her goal is to help Demi and others that are impacted be as independent and fulfilled as possible.

  • Caroline Claflin

    Caroline is a communications professional with fifteen years of experience in design, writing, video and animation. She currently serves as Director of Communications at the Brown University School of Public Health, and has previously held communications roles at Harvard University and Northwestern University. She has a BFA from the Rhode Island School of Design and an MFA from the University of Pennsylvania. She is a proud parent to two sons, the oldest of whom was diagnosed with MCHS at the age of two. Her son Darwin is a sweet and snuggly sensory-seeker who loves trucks and wheels.

  • Ann Matthews

    Ann is Mom to two daughters, the oldest, Audrey, has a MEF2C diagnosis. Ann has a background in construction project management and international humanitarian logistics. She has a Masters Degree in Logistics Management and has held various positions with the United Nations. She is now a stay at home Mom, managing Audrey's busy schedule. Audrey is a sweet girl who enjoys music, swimming, and spending time outdoors with her family.

  • Michelle Busch

    Michelle is a mom of twin daughters. Chloe, the oldest twin, was diagnosed at age 10 months with a complete MEF2C deletion. Michelle has a Bachelor's degree in Chemistry and a Masters in Physician Assistant Studies. After her daughter's diagnosis. She put her career on hold to care for Chloe and attend therapy and medical appointments full time. With her science and medical background, she has an interest in MEF2C research. She looks forward to sharing her family's experiences with other families. Chloe has a reputation for being a very communicative non-verbal young woman who draws you in with her contagious smile and meaningful facial expressions.

  • Mary Bischoff

    A native Hoosier, Mary Bischoff spent her childhood romping through cemeteries and reading 1930s comics in courthouse basements while her parents did genealogical research. Among the jobs in her past, she has been a licensed claims representative, a reservations agent for a major airline, owned her own medical legal transcription/proofreading business and worked in an Indianapolis hospital during the Covid years. Now happily retired, she loves spending more time with her granddaughter Adaline, who has a MEF2C mutation.

  • Katie Kerwin

    Katie Kerwin is a dedicated mother of four incredible children: Claire, Caroline, Tommy, and John. Her journey as a mother has been marked by love, resilience, and an unwavering commitment to the well-being of her family, particularly her eldest daughter, Claire. At the age of 8, Claire was diagnosed with a MEF2C mutation, a rare and challenging genetic condition. The path to this diagnosis was long and uncertain as Claire's family tirelessly searched for answers to the mysteries surrounding Claire's development and health. Despite Claire's daily challenges, she is an extraordinary child with a heart full of compassion and an innate appreciation for beauty and excellence. Katie's passion for finding a cure for children with MEF2C mutations is boundless, as is a mother's love.

  • Meredith San Antonio

    Meredith works for a creative agency and has spent her career mostly in the field of marketing. Meredith has two children, her youngest, Valentina, was diagnosed with a point mutation of the MEF2C gene at 15 months. Valentina is a sweet and joyful little girl. She is happiest when listening to music, playing with light up toys, swimming and receiving love! Meredith is dedicated to finding a cure and advocating for children with MEF2C mutations as well as promoting inclusion and kindness.

  • Aleah Vickers

    Aleah is an attorney specializing in privacy and data security, and a mom to two wonderful boys. Her oldest son Beau was diagnosed with a MEF2C mutation at two and a half years old. Beau serves as an inspiration to his community as he takes on life's daily challenges with positivity and determination. Aleah joins the Parent Advisory Board to help advocate for Beau and all affected by MEF2C related disorders.

  • Moriah Zwick

    Moriah is a Registered Nurse working in Labor & Delivery and Emergency Medicine. She is married to her high school sweetheart Adam who is a remote QA analyst. Having struggled with idiopathic childhood epilepsy herself, Moriah has made it her mission to support parents going through this journey as a past-patient and now a parent. Her oldest, Lincoln, was born in 2019 a few months after she graduated from the Murray State University Nursing School. Noah was born in 2022, and she always felt like she was missing something. After a year of unanswered questions, Noah received his diagnosis of MEF2C microdeletion at 9 months of age through an SNP microarray. Moriah backed-off on her hours at the hospital and is now actively involved in all of Noah's therapies, and learning more about MEF2C to better help Noah's development.

Our Parent Advisory Board advises our Board of Directors, brainstorms ideas and shares insights from the parent perspective.

Want to become a member of our Parent Advisory Board?

Responsibilities of Parent Advisory Board include, but are not limited to:

  1. Virtual Meetings with Board Members

  2. Special Projects

  3. Regional Advocacy - Raise awareness of MEF2C within the medical community to ensure MEF2C mutations are tested for and appear on all possible panels. Create advocacy and awareness in your community (amongst educators, therapists, teachers, parents and other community members).

  4. Fundraising Support - Create community campaigns to support projects in the pipeline, including outreach to companies for charitable donations and fundraising events.

For more information on becoming a member of our Parent Advisory Board: