Reflections of 2013


It is that time of year when most of us look back on the accomplishments of the current year and look forward to the opportunities and challenges that lie ahead. It has indeed been a banner year for us here at Hope for HH and we have been thrilled to be able to accomplish so much to improve the lives of individuals and families affected by HH. Some of the major highlights include hosting the 2nd International HH Symposium in Marseille and funding our first HH research project at Barrow Neurological Institute under the direction of Dr Jai Wu. But today I would like to take a moment to thank the incredible women that are behind the website, the media outreach, the extensive research material, the fundraising and the overall direction of Hope for HH!  These women are the heart and soul of this organization and I am blessed to call them colleagues and friends. I would even go so far as to call them sisters – sisters, that in a way, life chose for me – and I couldn’t imagine life without them! You all know them as the tireless volunteers, Board of Directors, and the passion behind the organization! But I get to know them as the mothers and grandmothers of individuals with HH. Caring women that give their time and talents to a cause they believe in. I am inspired by their commitment to do anything that makes the HH road easier for families that have to walk it. They give their time freely and often spend hours talking with other families to answer questions and provide emotional support. They are indeed my heros. I would also like to thank the members of our Medical Advisory Board. These doctors also give their time without compensation and are working to unlock the mysteries that make HH such a challenge to diagnose and treat. They are innovators and pioneers and we are grateful they have joined with us to make a difference as well. In 2014, Hope for HH will continue to develop an international registry of patients that would be available to doctors and research scientists for the purpose of developing more targeted treatments for this complex condition. We also hope that one day this might lead to a cure for all individuals affected by HH. Please join with this passionate group by signing up with Hope for HH, raise funds – no matter how large or small, and tell everyone about HH. You never know where that information may go and whose life you may touch in the New Year!