Board of Directors

Erica Webster

Erica Webster

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 Hamaromas.

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

Lisa Dunn Soeby

Vice-President, Co-Founder | Phoenix, Arizona, USA

Lisa’s son CJ was diagnosed with an HH in 1997 at the age of 3 months.CJ underwent HH surgery at Royal Children’s Hospital, Melbourne, Australia at age 4, and again later at ages 8 and 14 at Barrow Neurological Institute in Phoenix, AZ. Lisa received her BS in Computer Information Systems from Colorado State University and her MBA from Golden Gate University. Lisa spent 12 years on active duty as a Communications Officer. Since 2004, Lisa has been a Patient Liaison for Barrow Neurological Institute in Phoenix, AZ where she and her family helped establish the world’s most comprehensive treatment facility for Hypothalamic Hamartomas. Lisa’s concern for families newly diagnosed with HH led to the vision for Hope for HH.

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).

Kimberly Ranson

Kimberly Ranson

Treasurer | New Brunswick, Canada

Kimberly's bio is coming soon!

Emma Nott

Emma Nott

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).

 

Kathy Jensen

Kathy Jensen

Director of Support | Phoenix, Arizona, USA

Kathy’s son Colby was diagnosed with HH in 2013 at the age of 3 years old.  Colby underwent two laser ablations at Barrow Neurological Institute in Phoenix, AZ at the age of 3.5 years and 4 years and an endoscope at Phoenix Children’s hospital at the age of 6.5 years old.  Kathy works part-time as a Radiology Technologist at a local hospital.  She was moved by the difficulty of diagnosing this condition, obtaining the correct prognosis and finding experienced physicians for treatment.  Kathy’s whole family helps put the Surgical Bags together and support other families on the same journey.