Governing Board
Kearstyn Shaw
President
Kearstyn’s son Asher was diagnosed with BFLS at four months old. She was given very little information on what the disorder was and found the lack of resources and support unacceptable. She vowed to make a difference in the BFLS community and set out to connect with other families who had been diagnosed with this rare disorder. After being referred to and connecting with geneticist Dr. Curry, she was inspired and encouraged to start our nonprofit, BFLS Inc. The goal and mission of this nonprofit is to fund further research and essentially support findings that can mitigate the symptoms of BFLS. Our slogan “born fierce, living strong” demonstrates our belief that those diagnosed with BFLS are an inspiration to us all.
Prior to Kearstyn’s nonprofit journey, she was an elementary school teacher for seven years. She also has her Masters degree in School Administration and truly enjoys working with and teaching children. When she is not advocating on behalf of the BFLS community, Kearstyn enjoys spending time with her family, camping and traveling to new places. She also enjoys working with foster youth, reading and cooking, particularly cooking real food blends to give to Asher via his G-tube.
Monique Wonderly
Vice President
Monique has been part of the rare disease community and interested in rare disease research since 2011 when she was diagnosed with pediatric onset Crohn’s disease after years of symptoms. Since her diagnosis, she has participated in multiple clinical trials in relation to her impaired immune system and additional rare diseases diagnosed throughout the years. She actively participates in fundraising activities with the Crohn’s and Colitis Foundation of America (CCFA) and is excited to join the board of BFLS Inc. this year!
Monique completed her Bachelor’s of Science degree in Biomedical Engineering at the University of California, Irvine and her Master’s of Science degree in Medical Device and Diagnostic Engineering at the University of Southern California (USC). She has worked in the Medical Device Industry in Bioprosthetic Heart Valves and Neurovascular Hemorrhagic Stroke Devices as a Medical Device Manufacturing Engineer for 7 years in the Orange County, California area. Monique also is an Adjunct Professor of Statistics at Vanguard University of Southern California. In her free time, Monique enjoys spending time with family, friends, and her cat Phoebe, watching sporting events like college football and major league baseball, and taking long drives (usually to/from doctor appointments).
Lisa Gilbert
Secretary
As founder Kearstyn’s mom and Asher’s Gigi, Lisa Gilbert has been blessed to be a part of this nonprofit journey from Asher’s birth to diagnosis to now watching him crush his inchstones. Watching her oldest child Kearstyn blossom into a fiercely dedicated advocate for her own children and families facing rare diseases has filled her heart with inspiration.
Lisa has dedicated her life to serving children and families through education over the past 36 years, as a former special education teacher, counselor, principal and superintendent. She is a first generation college graduate, receiving her Bachelor’s in Psychology, a Master’s in School Counseling and her doctorate in Organizational Change and Leadership from USC. She is extremely proud that all three of her children have earned a Bachelor’s degree. Her favorite pastime is spending time with her four grandchildren, Roxzen, Walker, Asher and Mila. She loves to read, camp and fish and is looking forward to traveling the world in her retirement.
Julie Shaw
Treasurer
Julie joined the rare disease community when her 3rd grandchild was born and diagnosed with BFLS. As Mimi of 4 grandchildren, she wanted to help to figure out why and how something like this could happen to a child. Julie became the treasurer of our nonprofit to help with keeping track of our finances. She has 38 years of experience with bookkeeping, between her job as the office manager at her family flower shop and currently with her husband and son’s (Grampi & Daddy to Asher) growing equipment sales and rental business.
Julie’s experience at the flower shop with helping with party and wedding set up has made her the prime candidate to help with the coordination of our fundraisers for BFLS, Inc.
In her off time she enjoys camping, off-road riding, visiting their cabin, spending time with friends and playing with and spoiling all her grandkids
Heather Richter
Marketing & Community Engagement
Heather has a deep-rooted passion for supporting individuals with disabilities, which began with the birth of her first daughter. Kailey was born 27 years ago with several medical conditions, albeit without a specific syndrome. This experience triggered Heather's advocacy efforts, and she delved into researching as much as possible about her daughter’s disabilities. Unfortunately, there was little research available for Kailey's specific needs, which fueled Heather's desire to join our team. Heather firmly believes every parent wants to advocate for their child, and she is determined to help others avoid similar experiences by ensuring other parents better understand BFLS.
Heather has been serving children and families for the past 27 years as an educator, supporting students in a variety of roles such as general education teacher, special education teacher, assistant principal, principal, director of special education, management analyst, and administrator of continuous improvement support. She holds a Bachelor's Degree in Child Development with a concentration in education, a Master's Degree in Educational Leadership, and a Doctorate Degree in Educational Leadership. Additionally, she is an adjunct professor at Fresno Pacific University, where she enjoys supporting future school psychologists. In her free time, Heather enjoys being a parent with her husband, Adam, to four growing and thriving children, being a lifelong learner, and traveling the world to see all its beauty.
Nikki Griffith
Fundraising & Events
Nikki is the proud business owner of Charlee Walker, an apparel shop and Core Industrial, a professional solar cleaning company. She is a wife and mother of two, Charlee (6) & Walker (3). She graduated from CSUB with her bachelors in Communication.
Nikki became involved with BFLS Inc. at the very start of our organization in 2022. She planned and helped run our first event, just out of the goodness of her heart and is doing the same again this year. So, we decided to vote her in as our fundraising and event planning chair! She is organized, driven, and always has great ideas to help us raise money.
On her days off, she enjoys spending time with her family at the lake or beach. Pretty much everything outdoors!
Strategic Advisors
Helen McRae
Scientific Advisor
Helen McRae is a postdoctoral fellow working in the Hargreaves laboratory at the Salk Institute for Biological Studies in San Diego, California. She received her B.Sc (Hons) majoring in genetics from the University of Melbourne in Australia and completed her PhD through the Walter and Eliza Hall Institute of Medical Research in Australia. Under the supervision of Anne Voss, PhD, and Tim Thomas, PhD, Helen worked on studying the function of PHF6 in blood development and tumor suppression in hematological malignancies. Helen also characterized the PHF6-dependent endocrine phenotypes and mechanisms in a mouse model of BFLS (Börjeson-Forssman-Lehman Syndrome).
Jan Taylor
Nursing Advisor
It all begins with an idea. Maybe you want to launch a business. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world. Whatever it is, the way you tell your story online can make all the difference.
Medical and Scientific Advisory Board
Mark Corbett, PhD
Mark (PhD, University of Sydney 2004), is a postdoctoral research fellow based at the University of Adelaide, Medical School. Throughout his career he has used innovative DNA and RNA sequencing techniques to implicate new genes in neurodevelopmental disorders including the first discovery of an epilepsy gene (TBC1D24) by short read sequencing. He has a long-standing interest in the genetics of X-linked intellectual disability contributing multiple gene discoveries and generating new biological insights into the mechanisms that govern the function of the brain. Collectively, his discoveries have led to genetic diagnoses for thousands of individuals living with neurodevelopmental disorders around the world.
A/PROF Matthew Hunter
DIRECTOR OF GENERAL GENETICS DEPARTMENT, MONASH HEALTH, MELBOURNE, AUSTRALIA
ADJUNCT CLINICAL ASSOCIATE PROFESSOR, DEPARTMENT OF PAEDIATRICS, MONASH UNIVERSITY, MELBOURNE, AUSTRALIA
(Scientific Board of the Fragile X Association of Australasia)
Matthew obtained his medical degree through the university of Cape Town, South Africa. He trained in paediatrics and genetics in Brisbane and Melbourne. In 2014 he was appointed the Director of General Genetics at Monash Health. Matthew has 28 years of experience in clinical medicine, and 17 years in clinical genetics. Matthew is passionate about patient care in the Monash Genetics clinic. Matthew has studied and published on the clinical aspects of BFLS. His current research focuses on translation of genomics into clinical practice, deafness genetics and the genetics of intellectual disability syndromes and Fragile X syndrome.
David Picketts, PhD
Dr. Picketts obtained his PhD from Queen’s University (Kingston, Canada; 1993), completed PDF studies at the Weatherall Institute of Molecular Medicine (1997), after which he joined the University of Ottawa and the Ottawa Hospital Research Institute. His research is focused on understanding the role of epigenetic regulators in brain development and neurodevelopmental disorders (NDDs). The Picketts laboratory has focused on the generation and characterization of transgenic mice that model different NDDs. His laboratory has characterized the first models of the ATR-X syndrome, NEDDFL syndrome (BPTF gene), and the BFLS syndrome (PHF6 gene) that have unraveled novel disease mechanisms for these disorders. In addition, his lab studies the interplay between two closely related chromatin remodelers of the ISWI family, SMARCA1 and SMARCA5, to dissect their complementary roles during forebrain development. He also volunteers his time and expertise to the ATRX Research Alliance as a Scientific Advisory Board Member.
