When Grace was initial diagnosed, the information on HH was limited and when you did an internet search on hypothalamic hamartomas it returned less than 10 results.  We had been told the condition was rare, but it wasn’t until we began our search for answers did reality hit us.

I’m happy to announce that we’ve officially launched a nonprofit specifically for HH.  Below are the details from our release announcement.

We are pleased to announce the launch of  Hope for Hypothalamic Hamartomas (Hope for HH), a 501©3 non-profit organization and website  (www.hopeforhh.org) dedicated to providing information, support, and research data to individuals with hypothalamic hamartomas (HH).

Hope for HH was founded by Lisa Soeby, Ilene Miller, Dawn Cerven, and Erica Webster - 4 dedicated parents of children with HH.  Collectively, we bring professional expertise in business, non-profit management, website design, and social services.  We also have the support and blessing of an international community of HH doctors and researchers and will be adding a Medical Advisory Board to our organization later this year.  Hope for HH will provide:

*Information about HH symptoms, diagnosis, treatments, and specialized centers;
 *Tips for living with HH, and education resources;
 *HH research updates and articles, books, news stories, helpful links; and
 *Interactive forum for HH patients, caregivers, and healthcare providers to dialogue
As HH parents and caregivers, we hope you will VISIT THE WEBSITE, PARTICIPATE ON THE FORUMS, JOIN US AS AN ACTIVE MEMBER OF THIS COMMUNITY, SPREAD THE WORD ABOUT THIS RESOURCE, and MAKE A DONATION. Mostly, we hope you will help us DRIVE and DIRECT this organization to be the best possible resource for our community.


We are forever grateful to the many families that have given so much to see that the concerns of this community have been heard in the past.  Through their tireless efforts, and the incredible dedication of many doctors that have heard our pleas - there have been many amazing advancements in treatment options and the understanding of the complex nature of our kids.  It is our hope that TOGETHER we can continue to make a difference for our family members living with HH and those yet to be diagnosed.


Perry and I are so appreciative for all the support over the past 5 years.  Your support truly helped give us the strength to get Grace through all the ups and downs associated with HH.


As many of you know, Grace had been seizure and rage free for nearly 2 years after her brain surgery, but unfortunately in August 2009 she began to experience episodes which appears to be morphed forms of the pre-surgery gelastic seizures and rage issues.  No one really knows what the future holds for Grace or any of the other HH kids, but our hope is with this new nonprofit we can make a difference in the life of all HH children, including our Grace.

Thanks so much and we hope you visit the website (www.hopeforhh.org).
With Love,

Erica and Perry