Board of Directors
President, Co-Founder | Star, Idaho, USA
In 2005, Erica’s fourteen month old daughter, Grace, began to show the first signs of having a hypothalamic hamartoma when her pediatrician diagnosed her with precocious puberty after finding blood in her diaper. As a result of discovering the precocious puberty many follow up tests were conducted and eventually a MRI confirmed the rare brain tumor diagnosis. As time progress the other symptoms (multiple seizures, hypothalamic rages, cognitive impairment) developed and worsened leading to the family reaching out to other specialists. In April 2007, Grace underwent transcallosal surgery at Barrows Neurological Institute in Phoenix, AZ. The outcome of surgery was not as the family had hoped. Grace was in PICU and a neuro-rehabilitation center for 2 months and returned home suffering with long-term hypothalamic obesity, diabetes insipidous, low thyroid, cognitive impairments and eventually seizures as hypothalamic rages returned. In December 2011, Grace passed away from suspected SUDEP (Sudden Unexpected Death in Epilepsy). Grace’s legacy lives through the continued work Erica does through Hope For Hypothalamic Hamartomas.
Erica has a degree in Mechanical Engineering and has worked for over 20 years as a Project Manager and Business Analyst in technology sector.
In addition to being a Hope For HH Co-Founder and the current Hope For HH President, Erica is the Director of Information which includes management of the website, blog, social media and the Hope For HH Newsletter.
Lisa Dunn Soeby
Vice-President, Co-Founder | Eagle, Idaho, USA
Lisa’s son CJ was diagnosed with an HH in 1997, when he was just 3 months old. The process of getting doctors to listen and ultimately getting a correct diagnosis at that time was extremely challenging. Lisa and her family traveled to Royal Children’s Hospital in Melbourne Australia for surgery, as there were no HH treatment centers in the US at that time. CJ’s surgery was successful – a partial resection, and he was seizure-free for the time being. Lisa and her family returned to their home in Phoenix, AZ where she convinced the surgeons at Barrow Neurological Institute (BNI) to learn the innovative surgical procedure and develop the first comprehensive HH treatment protocol. Unfortunately, the seizures returned for CJ several years later and he went on to have 2 more surgeries at BNI to ultimately resect all of the remaining HH. CJ is currently seizure-free and working towards living independently.
Lisa is one of the founders of Hope for HH and is committed to using her experience and knowledge to change the way clinicians and researchers define HH as a syndrome, advance comprehensive treatment options, and fund critical research.
Lisa spent 12 years on Active Duty in the US Air Force as a Communications Officer. Lisa also has a BS in Computer Information Systems from Colorado State University and an MBA from Golden Gate University.
In addition to her role as Hope for HH Vice President, Lisa is also Director of Operations and liaison to our Professional Advisory Council (PAC).
Treasurer | New Brunswick, Canada
Kimberly is the proud mother of three children. Her middle child, Colin, was born with an extra pinky finger, some abnormal toe formations, and an “unusual cry”. At 4 months old Colin was diagnosed with a kidney condition, at 11 months he was diagnosed with HH then shortly after he was diagnosed with Pallister-Hall syndrome. Colin had laser ablation surgery at Texas Children’s hospital when he was 2.5 years old and again at age 3 which helped reduce but not eliminate his gelastic seizures. After trying multiple medications as well as the ketogenic diet Colin continues to have gelastic seizures but is a delight and a joy to all who know him.
Kimberly and her husband, Paul, have been attending the Family Conferences since their son was diagnosed and have sponsored their local Neurologist to attend the International Symposium. Seeing first hand the incredible work and research Hope for HH is driving in the medical community, and the support they provide to the HH family community, motivated Kimberly to offer her more than 10 years of professional accounting skills to the organization.
Kimberly is a Chartered Professional Accountant and also has her Bachelor of Education from the University of New Brunswick. Kimberly joined the Board of Directors late in 2019.
Secretary, Hope For HH UK Affliate Advisor | London, United Kingdom
Emma’s son Charlie was diagnosed with HH when he was 8, after years of misdiagnoses. As a result of her experience she joined Hope for HH as it was set up and has worked with the other Directors to support patients and caregivers, to spread awareness amongst the medical profession and to find a cure for all aspects of this syndrome. Emma is based in the UK and in 2015, together with two fellow Brits affected by HH, set up Hope for HH-UK and remains a trustee of this British arm of the organisation. Since 2018 Hope for HH-UK has been a member of EpiCARE, the European network for the rare and complex epilepsies. Emma has been secretary of the EpiCARE patient advocacy group since 2019, working with representatives of other rare epilepsies for the common good in the European Union and beyond. Charlie has two sisters and, when not parenting or advocating for Hope, Emma works full time in the legal profession.
In addition to Emma’s responsibilities as Secretary, she is also the Director of Research and Awareness. Emma works as the liaison to the Medical Advisory Board (MAB).
Director of Support | Phoenix, Arizona, USA
Kathy is the mother of two very active boys. Her family started their HH journey with their youngest son, Colby, in 2012. In the fall of 2013 Colby had his first surgery. He had two weeks seizure free before the gelastic seizures returned. Colby had his second surgery in the spring of 2014 and third in the winter of 2018. Even with all of the visible HH tumor removed, Colby still has seizures. Kathy is driven to help other HH families with their own journey. A few weeks before Colby’s first surgery she met a family that was scheduled to have surgery as well. It was at this point she felt the need to reach out and help other HH families, providing the first surgical bag.
Kathy and her husband home-school their two boys, travel whenever possible and enjoy the outdoors. She works part time at a local hospital as a radiology technologist. Kathy is committed to using her experience and knowledge to help families navigate the HH journey.
Kathy is the Director of Support which includes the Patient Support, Surgical Bag program, Family Forum events and outreach through Welcome Packets.