All FamilieSCN2A Board Members are unpaid volunteers. The goal of the Board is to work together to support the FamilieSCN2A Foundation mission which is to find a cure for our children.
Leah Schust's mother taught her to face adversity head-on -- "whatever you do, don't do nothing." So when Leah's son Ben was diagnosed with life-threatening seizures at 13 months (due to a rare genetic disorder), "doing nothing" was never an option. Instead, she launched the very first SCN2A support group through Facebook, uniting hundreds of families around the world who each thought they were alone in their medical fight. Leah and a few parents then created the FamilieSCN2A Foundation, devoted to increasing awareness and raising money to fund research for a cure. In addition to serving as the foundation's president, Leah is a loving mother and wife, executive meeting planner for a global Fortune 500 healthcare company, and foster mama to orphaned puppies. She lives in Frederick, Maryland. “Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world.” ~ Desmond Tutu
Carla Forbes has an internal drive to get things right. This drive stems from her many years spent in dance tediously practicing routines until she reached perfection. When her child was born and immediately started having seizures, she faced the challenge head on, fighting for the best care from the start. Carla does not settle for “good enough” in any aspect of her life, but especially not when it comes to her son, Colin. When she learned of his diagnosis, a rare genetic condition called SCN2A, she immersed herself in learning more and was one of the first to join the online support group set up to connect families with the same diagnosis. From day one, Carla spent her time in the group encouraging and surrounding the other parents with her positive and caring attitude. Quickly, she became a leader in the group and co-founded the FamilieSCN2A Foundation, a 501(c)3 set up to find a cure for SCN2A. Carla wears many hats to help in the foundation, including Vice President, Community Support Chair, Finance Committe Member, and family mentoring. But most importantly, she believes in a cure and makes it her life mission to share the hope with others.
In 2012, Jenny Burke was grateful to finally have a diagnosis for her son, Alex, who has suffered from devastating seizures since birth. But it wasn’t until Leah Schust connected with her three years later that she began to have hope in finding a cure for this rare genetic disorder. Jenny draws on her experience in publishing and that of being a small business owner to help the FamilieSCN2A Foundation reach it’s fundraising and research goals. She feels blessed to be working on behalf of all families affected by an SCN2A mutation at home while caring for her own family: Alex (15), his brother, Sam (17) and her husband, Mike. In her spare time between doctor/therapy appointments, Jenny may be found cheering at lacrosse games, reading for two books clubs and a Bible study, volunteering at the high school and with Young Life, and possiby exercising (or at least walking the dog). She lives in Sterling, Virginia.
Board member Michelle Lewis was blessed with the birth of her first and only child, Eliana, in 2013. Shortly after birth, Eliana began having seizures, which began a five month journey in the NICU, where Eliana received her SCN2A diagnosis. Along with being a FamilieSCN2A Foundation board member, Michelle is a full time high school social studies teacher and avid sports fan. She resides, with her family, in Kansas City, Missouri.
Title Director, Chair of Marketing Committee
In 2014, Kristy received the news that after 9 1/2 years of searching for answers, whole exome sequencing determined that her oldest daughter, Emily, has an SCN2A mutation. Immediately, Kristy turned to the Internet to find more information and came across families who already had joined forces through social media. Kristy has a passion for research and quest to find the best care, treatments and ultimately a cure for Emily, so it felt natural to join the FamilieSCN2A board to help kids across the world like Emily. Kristy resides in Stillwater, Minnesota with her husband, Mike, daughters Emily and Isabelle, along with their dog, Tito. Kristy is a full-time caregiver to Emily and when not attending appointments, meetings, or anything related to Emily's care she enjoys spending time with her family, watching movies, and working out. Kristy is passionate about helping others and jumps on the opportunity to help a family navigate the complex medical system and waivers in her home state. She joined forces with other Minnesota families to help get cannabis approved in the state of Minnesota for children and adults diagnosed with epilepsy. Kristy is also a former volunteer for the Washington County Family Support Committee which supported more than 10,000 families county wide who all had children with special or medical needs. When the committee was dissolved by the state, Kristy created her own private support committee which supports moms of children with special and medical needs within her school district. Kristy enjoys dabbling in web design and helping small businesses with marketing and branding. When not helping others or hanging with her family, you can find Kristy enjoying time with her close friends whom (many) also have children with special and medical needs. Kristy lives by her own motto of: "Live Gracefully; Believe Wholeheartedly."
Will is father to Emery and husband to Jamie, he thinks they make a pretty great team. By day he’s the founder and CEO of one of the top independent creative agencies in the Middle East (LMTD) and one of the foremost mentors in the MENA startup movement (Wamda, Techstars, Flat6, and MIT MediaLab). He’s been based in the Middle East for nearly 7 years and has built some of the best digital campaigns in the region.
Previous to this, he helped lead one of the fastest growing agencies in NYC (Carrot), and before that he was Managing Editor for Disney’s first foray into social media running the launch from strategy to implementation growing them to over 300 Million fans on Facebook and taking part of the first ever promoted tweet on Twitter.
Will is passionate about family, travel, and helping to find a cure for SCN2A disorders!
Catalina Betancur Santamaria
Catalina is originally from Colombia but has been living in the United States for the past 12 years. She is a mother of two boys and despite all the time she invested in higher education, she decided to dedicate her life to her children.
She has always had in her mind that one who perseveres, succeeds. So, when she noticed that Mateo, her younger son, was having difficulties to accomplish simple milestones, she knew something was not right. Catalina set her mind to find what was happening to Mateo in order to get him the help he needed. Little did she know, this turned to be the toughest time and fight of her life. Catalina had to educate herself in some areas that were unknown to her in order to have the right arguments to convince doctors and family members that Mateo needed help.
When Mateo was 18 months, he was diagnosed with a SCN2A related disorder and now they spend their days making most of them and “being the change they want to see in the world”. (Gandhi)
In 2016, Kris and her family found out the cause of her son’s condition. Will was 15 at the time. Will started having seizures on day 4 of life and it has been a roller coaster ride of close calls, endless doctor visits and hospital admissions since. Will has a twin sister Ella, who loves sport and is wise beyond her years.
Kris has always worked in the health field, originally training as nurse then moving in to project management and health research after completing a Masters in Health Education and Promotion and a Masters of Wellness.
Kris has a strong sense of community service which has led her to hold many positions. Kris has served as a board member of MOIRA (disability service) and Glenallen School council member. She currently sits on a number of committees representing and advocating for families, including Very Special Kids and the Royal Children’s Hospital. Kris has recently completed a certificate in Consumer Leadership.
When not managing Will’s medical and disability needs, Kris enjoys walking, having completed the Kokoda Track and Larapinta Trail. She also coaches netball and loves hanging out and recharging at the beach. Kris and her husband, David, developed and run an online sleep wellness site Sleephub. David and Kris also co-founded Genetic Epilepsy Team Australia (GETA) a group of parents advocating for awareness, funding and research for genetic epilepsies in Australia.
Maura is first and primarily a mother to Ashlyn in North Andover, Massachusetts who has SCN2A. There she works as an attorney for the national law firm managing Massachusetts and Maine cases against large banks and financial institutions.
Prior to moving back to Massachusetts from Maine a few years ago, Maura adjudicated business and employment cases for the Department of Labor. Previously, as General Counsel of a drug testing company, Maura minimized the legal risks advising its officers on matter of regulatory compliance.