All Things Kabuki would like to recognize the wonderful people who volunteer countless hours to help us grow while serving the Kabuki community. Thank you for your hard work and dedication to ATK! We appreciate all that you do.
Josh Beil - Director of Research
Josh lives just south of Seattle with his wife and daughter, Adelaide (4.5). Adelaide was diagnosed with Kabuki syndrome at two. Although she presents many of the classic features and traits, Adelaide did not show a mutation on either known Kabuki gene and has a “clinical-only” diagnosis.
Josh is a technologist and entrepreneur who has a background in market research. He has conducted quantitative and qualitative research, data analysis, and reporting on companies that make the Internet work for nearly 20 years. Josh is applying these professional research skills to ATK by driving our 2017 parent survey and findings, and he will also be involved in presenting results and coordinating future research projects with clinical researchers.
Serena Burks - Family Spotlight Coordinator, Webmaster & Publication Advisory Committee
Serena lives in Columbus, Ohio with her husband, Jayson, and two sons, Jeffrey (8) and Jaxson (4). Jaxson was diagnosed with Kabuki Syndrome after genetic testing at the age of 2.5. Jaxson has had 12 surgeries and countless other medical procedures, but like most Kabuki kids, you would never know because of his happy demeanor. A warrior at heart, Jaxson lights up every room he enters and commands attention from everyone he meets.
Before becoming a stay at home mom, Serena was a sports writer for 10 years. She has long desired to bring awareness about Kabuki Syndrome, and can think of no better way to do that than to tell the stories of those who live with it every day. Serena has also made contributions for The Mighty regarding Kabuki, Fibromyalgia and chronic illness, and is currently building her freelance copy editing business. She hopes to create a feeling of inclusion with familial stories and lend the feeling that we are not alone in our journeys.
Holly O'Brien - Publication Advisory Committee
Holly lives in Western Pennsylvania with her husband and four children. Cailyn (7), Mackenzie (4.5), Garrett (2), and Cadence (1). Cadence was diagnosed with Kabuki Syndrome at 4 months old after multiple health complications at birth led to open heart surgery and genetic testing at 2 weeks old. Despite all her challenges Cadence is one of the happiest most pleasant little girls that you just can't help but love.
Now a "professional" stay at home mom, Holly previously headed the procurements and contracts department for a large security and background investigation company. We are thankful for the countless hours Holly spent helping us redesign our brochure, before officially joining our team.
Ashley Taylor - Publication Advisory Committee
Ashley has a 13 year old son and her and her boyfriend have a 4 year old son who was genetically diagnosed with Kabuki at 2. He is truly amazing and blows her away every day!! Ashley is a stay-at-home mom and on the side loves crafting and fishing with her oldest son. She is excited to be part of the All Things Kabuki family!
Kathy Reed - Nutrition Director
Kathy is a trained counselor with a degree in Psychology. She has worked in the field of social and statistical research for more than 20 years. Kathy is also a passionate writer and published author. She has written for two of Australia's leading parenting magazines, and has been a staff blogger for Mommies of Miracles, a support group for mothers of children with special needs, and she writes a personal blog about her daughter Sophie.
Kathy first became passionate about diet, nutrition and biomedical intervention seven years ago. She was desperately searching for ways to help her daughter, and was finding that the mainstream medical system was not able to help with many of Sophie’s presenting issues. After much research, she put Sophie onto the GAPS diet, that focuses on healing the gut, to improve brain functioning and overall health. She also started researching the specific gene defect related to Kabuki syndrome, and started Sophie on a biomedical protocol specifically tailored to address that gene mutation. With a combination of dietary and biomedical intervention Sophie blossomed. Sophie is now aged 7 and attends a mainstream school with no additional support in the classroom. She is a bright, thriving, happy little girl.
Kathy volunteers a lot of her time to unpaid disability advocacy work, helping parents to learn how to navigate the system, and supporting them through their journey from before diagnosis onward. She is currently undertaking formal studies in Nutritional Medicine and will be an accredited nutritionist and dietitian when she graduates in May 2018. Her dream is to open a holistic practice working with parents of children with special needs, teaching them how to “navigate the system”, providing counseling, and teaching them about optimal nutrition so that their children can lead the happiest and healthiest lives possible.