Lisa Dunn Soeby, President
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.
Ilene Penn Miller, Vice-President and Treasurer
Ilene’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.
Erica Webster, Secretary
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.
Emma Kane, Research Coordinator
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.
Wendi Tipps, Fundraising Coordinator
Wendi’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.
We would like to offer a Special Thank You to the following individuals and organizatitons for their generous time and pro bono support of Hope for Hypothalamic Hamartomas.
- Attorneys Jeremy D. Zangara, Harry Friedman, and Tim Bass and the law firm Greenberg Traurig, LLP who helped prepare incorporation and other legal documents.
- Attorneys Lawrence Prosen, Bruce Nielson, Christopher Adkins, and Viren Soni and the law firm of K&L Gates LLP who helped review privacy, HIPPA, copyright and other website related matters.
- Dr John (Jack) F. Kerrigan, Director, Hypothalamic Hamartoma Program at Barrow Neurological Institute at Phoenix Children's Hospital for providing a quarterly research update and ongoing advice and support.
- Maggie Varland Bobrowitz, RN, MBA, Neuroscience Program Coordinator at BNI’s Hypothalamic Hamartoma Centers located at both BNI/St Joseph's Hospital and Phoenix Children's Hospital for helping review website content.
- Also to Dr. Harold Rekate, Director, The Chiari Institute, Great Neck, NY; Dr. Simon Harvey, Director of Children’s Epilepsy Program at The Royal Children’s Hospital, Melbourne, Australia; and Dr. Alexis Arzimanoglou, Head, Institute for Children and Adolescents with Epilepsy IDEE and Neurophysiology Department University Hospitals of Lyon, France who generously provided time and advice concerning research articles.
- CPA Polly Janz who is providing accounting oversight.
- Volunteer Emma Kane for being our “go to” researcher and developing the research references and In the News sections of the website.
- Thanks to Dawn Cerven, HH parent and caregiver and professionally trained counselor, who graciously offered her time and advice to help found Hope for HH.
We would like to give a special thanks to our husbands, children, families, and friends who have given their support, advice, critiques, money, and time. You know who you are and without your love, understanding, and support we would not have been able to see this through. Our heartfelt thanks!