KARES Board of Directors

Board Chair

Amy lives in Washington state with her husband, Chris, two daughters, Gabby & Ashley, and yellow lab, Newey. Gabby is affected by KDM5C and was diagnosed at age 10. Amy created the Facebook Support Group to bring KDM5C families together in 2018, and she has been an integral part of the formation of the KARES Foundation in cooperation with families and researchers.

Board Vice Chair

Lara lives in Idaho with her husband, Jeff, daughter, Whitney, and miniature schnauzer, Milo. Whitney was diagnosed with KDM5C in 2019 when she was 13. Lara’s oldest daughter, Savannah, is currently studying Music Therapy at Utah State University. Lara is passionate about advocacy, inclusion, and spreading KDM5C awareness.

Treasurer

Amanda is married to Jerry, and they have 3 children, Jack, Owen, and Ella. She enjoys family vacations, reading, and attending her children’s sports. Jack was diagnosed with KDM5C when he was 7. Amanda acts as the Treasurer for KARES and Chairs the Finance Committee. Amanda is a CPA and CHFP and works as the Vice President-Controller for OSF HealthCare System.

Secretary

Melissa lives in North Carolina with her husband, Steven, and 3 kids, Julian, Javi, and Emi. Julian was diagnosed with KDM5C in 2020 at age 4. Melissa works in nonprofit digital content management and is a strong advocate at the intersection of diability rights and human rights. Melissa manages KARES’ website, social media, email marketing, and student intern program.

Scientific Advisory Board Chair

Dr. Secombe is a Professor of Genetics & Neuroscience at the Albert Einstein College of Medicine in NY. She is a member of the Rose F. Kennedy Intellectual & Developmental Disabilities Research Center. Dr. Secombe obtained her B.Sc & PhD at the University of Adelaide in Australia. Dr. Secombe’s research focuses on understanding how the KDM5C protein regulates gene expression programs that are critical for neuronal development and function.

Joni lives in Texas with his wife April and their five KDM5C affected kids Eva, Ellie, Eric, Eli and Eugene. The first of their KDM5C diagnoses came in 2021 with the others quickly following thereafter. Having always been an advocate for those with special needs, upon getting the kids’ diagnoses Joni has been involved in the KDM5C community as much as possible including meeting several families from the US and abroad in person to share their experiences.

Heather lives in New York with her husband, Dave, and their 2 children, Natalie and Porter. Porter was diagnosed with KDM5C disorder in 2015 when he was 2. Heather has been a part of the Facebook Support Group since its establishment, and her family attended the in-person Rare Disease Day in 2020.

Shawn lives in Portland, Oregon with her husband David, her daughter Olivia, son Max and fur-baby Emma. She has been an attorney since 1999 in the areas of corporate, securities and finance law, with certifications in Business Law and Corporate Governance. She currently serves as Vice President, Chief Compliance Officer and Corporate Secretary for NW Natural Holdings. Shawn’s daughter Olivia is an intern for KARES. With a life-long passion for disability rights and justice, Shawn is particularly excited about pursuing near-term therapeutics to alleviate symptoms of KDM5C.

Corey lives in Austin, Texas with her husband, two sons, Brian and Austin, and boxer and Great Dane pups. Corey works in technology as a Content Management specialist. She enjoys outdoor activities and is a green belt in Tang Soo Do. Austin was diagnosed with KDM5C in 2021 at age 3. Since, Corey has been active on Facebook group and passionate about spreading awareness of this rare disorder.