Board of Directors
Ilene Penn Miller
President | Bethesda, MDIlene’s son Mark was diagnosed with a HH at age 5 after several years of incorrect diagnoses. He underwent Gamma Knife Surgery at the University of Pittsburgh in August 2007. Ilene graduated from Boston University with a BS in Mass Communications and earned a law degree at Catholic University and a LLM from Georgetown. Ilene lobbied in Washington, DC; directed a national cancer foundation; and consults with nonprofits on management, program and policy development, and fundraising. She also helps law school applicants perfect their application strategies and submission materials. Ilene has used her non-profit consulting, legal, and advocacy background to guide Hope for HH from conception to inception.
Lisa Dunn Soeby
Vice-President | Phoenix, AZ
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.
Treasurer | Livonia, MIJulie’s nephew Mark was diagnosed with HH at age 5. Julie graduated from Ferris State University with a BS in Hospitality Management and a MBA with University of Phoenix. Julie has been involved in American Cancer Society, spokesperson and National Kidney Foundation of Michigan, Mentor. Julie has worked in the finance industry for 15 years and supports small business as a bookkeeper.
Secretary | Star, ID
In 2005, Erica’s daughter, Grace, was diagnosed with a HH at only fourteen months old. In April 2007, Grace underwent transcallosal surgery at Barrows Neurological Institute in Phoenix, AZ. In December 2011, Grace passed away as a result of a seizure she experienced during the night. Grace's legacy lives through the continued efforts of Erica and Perry to help drive the goals of Hope for HH. Erica graduated from California State University at Sacramento with a BS in Mechanical Engineering. For the past 11 years, Erica has worked as a Business Analyst and Project Manager with a focus on web-based application design, configuration, and deployment of enterprise solution software. Erica’s gift for design can be seen throughout the Hope for HH website and her experience in driving software deployments from initial design through launch has brought to life the Hope for HH website.
Research Coordinator & UK Affiliate BOD | London, UK
Emma’s son Charlie was diagnosed with HH in February 2009 at the age of 7 after some years of incorrect diagnoses. In October 2009 Charlie underwent Gamma Knife Surgery at the Timone Hospital, Marseille, France. Emma graduated from Cambridge University with an MA in Classics and Law, and was called to the Bar in 1995. Since 2001 she has combined motherhood with her career as a criminal barrister, and is proud to bring her research and advocacy skills to the Hope for HH Board
Patient Support Coordinator | Phoenix, AZ
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.
Fundraising Coordinator | Valleyview, TXWendi’s son Landon was diagnosed with HH in January 2009 at the age of 3. Landon’s first HH surgery was in April 2009 at Barrow Neurological Institute and his second was September 2011 at Long Island-Cohen Children's Hospital. Landon has also undergone surgeries for other brain related anomalies including a partial removal of the left parietal lobe and temporal lobe. He has been diagnosed with a genetic microduplication of 17p11.2. Wendi has been a dedicated advocate and volunteer for many years. Her initiatives such as the establishment of a Family Advisory Council at Cook Children’s Hospital in Ft Worth, TX and the new “About Me” boards for every room (425 total) in the hospital, earned her the award of 2011 Family Advisor of the Year”. Wendi’s proven performance when it comes to fundraising and her passion for making a difference makes her a valuable member of the Hope for HH Board.