Shannon Boyle lives near Philadelphia, Pennsylvania in the USA with her husband and their 4 children, including their SON-Shine, Audra. Audra joined their family through the blessing of international adoption in 2013 when she was five and half years old. Upon returning home from China, their world was immediately thrust into evaluating the medical mystery that Audra was. In 2017 Audra was diagnosed with ZTTK syndrome and so many pieces of the puzzle finally started to fit together.

Shannon is a founding member of the ZTTK SON-Shine Foundation, having been involved since 2017 including assisting with its incorporation in 2021. She was elected to the inaugural board of directors in 2021 as Secretary and later was appointed to fill the vacancy of President in 2023. Shannon is honored to have been re-elected to President in 2026 and is committed to continuing to serve the Foundation and the ZTTK community. She is looking forward to continuing to support the foundation's missions of research, community support and advocacy.

Shannon received a Bachelor of Science in Nursing from Gwynedd-Mercy College in 1998. She has been working as a Registered Nurse in the Pediatric Intensive Care Unit at Children's Hospital of Philadelphia since 1999 in various roles ranging from bedside nurse to Clinical Nurse Expert and her current position of Nursing Clinical Supervisor - with special interests in professional development, quality improvement and emergency preparedness. She has achieved certification as a Critical Care Registered Nurse. In 2020 Shannon was the recipient of the hospital's Department of Nursing Excellence in Leadership Award.

Kerry lives in Westchester County, New York with her husband and two sons. Her son Jack was diagnosed with ZTTK Syndrome in 2021 when he was eight months old. He is now a determined, loving, inquisitive kindergartener who loves music, climbing, and cuddling.

As a rare disease mom and an attorney, Kerry is an advocate by passion and profession. She is currently the Co-Head of Initial Listings and ETPs in the Regulation Department of the New York Stock Exchange, where she manages a team responsible for reviewing all companies and products that list on the Exchange for compliance with listing requirements. Prior to joining the NYSE, she was a criminal defense and investigations attorney at a large law firm and worked for the Judiciary Committee of the U.S. House of Representatives. She earned her JD from Cornell Law School and her BA from Boston College.

As another rare disease mom described it, getting Jack's diagnosis was a "grief and a relief." Although the diagnosis confirmed that Jack would face medical hardships and that his life may look different from what Kerry had imagined, it also meant that they were a part of a larger community, a community that understands the joy, fulfillment, and love that come with parenting a child with ZTTK Syndrome. Kerry is honored to serve as Vice President of Foundation and Vice Chair of the Board.

Casey Ganer resides in Westchester County, NY with his wife, Michelle, their three children, and their favorite cuddler, Kaia.

After months and months of doctor visits and tests, Casey's daughter was diagnosed with ZTTK at 2 years old. She is a determined, confident girl who continues to amaze everyone with her passion for life, her ability to laugh, and her sense of humor. She may be small but she sure is mighty. She absolutely adores her brothers and is an amazing big sister.

In addition to serving on the ZTTK Board as the Treasurer, Casey is the Private Wealth Industry Leader at Bonadio & Co., LLP. He specializes in family offices, partnerships and public accounting services. His day to day energy is spent helping professionals in the entertainment industry, high-net-worth individuals, entrepreneurs, and business owners.

Casey is an avid lover of music and has traveled around the country following Phish. He's lived in Colorado, California, New York and Belgium. He received his Bachelor's degree from the University of Colorado at Boulder and his Master's in Business Taxation from USC. He is passionate about the outdoors, traveling, and cooking.

Jane lives just outside of Toronto, Ontario (Canada) with her husband, Paul, and their son Thomas, who was diagnosed with ZTTK in 2017. Thomas is now a resilient 13-year-old with an infectious laugh and a great love of books and sports.

Jane has 13 years of professional work experience in the financial services sector, primarily in Human Resources (Executive Compensation Governance and Employee Relations). She is also a long-standing member and Secretary of the School Council at Thomas' school. She holds a J.D. from the University of British Columbia Faculty of Law and an Honors Bachelor of Health Sciences degree from Western University.

Jane is grateful to have connected with the ZTTK community in 2017 when Thomas was first diagnosed. Growing and learning from other ZTTK families has been extremely helpful and meaningful while facing the challenges of raising a child with a rare and complex disease. Jane is honored to be able to give back to the ZTTK community by serving as Secretary of the Board and she looks forward to playing a valuable role in the Foundation's continued work to raise awareness and embark on new and exciting research.

As a Board Member of the ZTTK SON-Shine Foundation, Ada is committed to accelerating drug development for her son Lucas and others with ZTTK.

Drawing from her professional background in strategy, data analytics, and finance, she brings valuable insights into collaborating with diverse teams across different regions and partnering with both private sector and non-profit organizations to drive impactful change. Ada's passion lies in improving health equity for underserved communities. Currently serving as the Director of Strategy at CVS Health, she is dedicated to driving accessibility and affordability in healthcare products and services.

With a degree in Economics from Harvard and an MBA from The Wharton School at University of Pennsylvania, she is eager to leverage her professional and educational backgrounds to remove barriers in rare diseases and enhancing health outcomes for our ZTTK community.

When Ada is not working, she enjoys exploring local fun spots and engaging in community events in Somerville with her husband Nathan, Lucas, and their pup Luna. An avid fitness enthusiast, she also takes pleasure in participating in local races – and she hopes Lucas can join her in the future!

Andrea Machado lives in Portugal in a city south of Lisbon with her husband Andre and their two children, Daniel (13) and Matilde (7).

Before that, they lived in London (UK), where both of their children were born. In 2018, after almost 6 years of intense research, tests, and an invitation to join the Deciphering Developmental Disorders (DDD) study in 2015, her oldest son Daniel was diagnosed with ZTTK.

Soon after, Andrea found out through her son's geneticist about the SON-Shine Foundation. She was delighted and immediately felt less isolated. She is very happy to be part of the ZTTK community and a board member.

Andrea has lived in different countries in Europe. Being a board member living outside the USA, she strongly feels capable of helping the ZTTK SON-Shine foundation to interact and support families and patients with ZTTK from other countries, promoting community, outreach, and regional interactions.

Andrea is a self-employed architect and has a flexible schedule which allows her to help her son through the different medical appointments, therapies, and activities as well as battling for her son's rights.

Andrea loves spending time with her family, cooking and baking and is an avid reader.

Julie Shah lives in Harrisburg, Pennsylvania with her husband, Saunak, and their two sons. Her youngest son, Lucas, was diagnosed with ZTTK in 2021 at just two years old, an experience that has deeply shaped her commitment to supporting families affected by rare disease.

Julie brings a strong background in accounting and finance, holding her CPA license and serving as a part-time Director of Finance for a leading national nonprofit organization specializing in developmental, behavioral health, and educational services. Her work spans financial leadership, organizational stewardship, and mission-driven service to diverse communities across the country.

Honored to be part of the Foundation and this community, Julie is eager to contribute her skills, perspective, and dedication to help propel the Foundation's mission and support families navigating ZTTK.

Hilary lives in Brooklyn, New York with her husband, Will, and their two kids. Her son Rahm was diagnosed with ZTTK Syndrome in 2024 at just three months old, following a genetic workup to investigate his hearing loss. Today, he is an adorable, affectionate, silly toddler who loves books, music, playing with his sister, and being outside whenever possible. Rahm is focused, persistent, and playful even through the hard work of his therapies.

Hilary brings to the Board a background in entrepreneurship, finance, and strategy. Most recently, she founded Hilma, a supplements company, which she grew and sold to a French pharmaceutical company. Earlier in her career, she held roles at consumer startups and larger corporations. She holds an MBA from Harvard Business School and a BA from Columbia University.

Hilary loves to travel and explore everything New York has to offer with her family. She is inspired by the rapid medical advances for individuals with genetic diagnoses, and in particular, the energy towards understanding and treating rare diseases. On the board, she hopes to help the ZTTK community connect, advocate, and benefit from the remarkable progress underway.