Community
Advocacy
Research &

Education

Message from the president



Happy New Year!  We thank everyone who made 2016 such a successful year for our HD community, and welcome new volunteers to join our UCI support organization! 2 017 is going to be another busy year for HD-CARE

We are now entering the 5th year since the start-up of HD-CARE.  Our support organization is unique in that we are an all-volunteer support group, and our main focus is based on supporting current HD research taking place at  UC Irvine, as well as contributing to the UCI HD Clinic and Clinical Trials.  We are also active in all areas of what HD-CARE stands for:  Huntington’s Disease Community Advocacy, Research & Education. 

2016 was an eventful year for HD-CARE.  Our HD community, our Board of Directors and our amazing friends have teamed up with Huntington’s disease researchers and public policy advocates from all over the country.  Our organization continues to collaborate with The Genetics Policy Institute, the California Institute for Regenerative Medicine (CIRM), and with Americans for Cures.  It has been noted by Alan Jakimo, JD, of Sidley Austin, LLP and so many other organizations that the collaboration taking place at UCI between the Researchers, the Faculty, and the HD community is the model of research, advocacy and community collaboration that they would like to be seen all over the world https://youtu.be/_eZK1crljnY.

Our inspiration has been driven by the compassion that UCI researchers have demonstrated.  This, in turn, has motivated our families with courage to continue advocating for an HD treatment and one day to end the devastation of Huntington’s disease. 

HD CARE funded several preclinical studies in the Thompson lab to evaluate ways to slow or delay disease in stem cell and other models of the disease.  These studies would not have been possible or performed as quickly without HD CARE support.  HD CARE also provided support to two young researchers to attend a national HD meeting and support for scientists in the lab to carry out innovative studies.  A grant was provided to Dr. Larry Marsh to complete an ongoing study to distinguish the toxic effects within different forms of the mutant HD protein in fruit flies and support provided to Dr. Joan Steffan for her work on how the normal function of HTT is compromised in HD and how one might restore that function.  For 2017, HD CARE will also provide matching funds for a Phase I safety clinical trial in early stage HD subjects by Dr. Neal Hermanowicz.

Through our Community Advocacy, we have raised greater support for HD Research, and by Educating the public about HD, we are doing our part to guard the dignity of the HD patient and furthering understanding of the disease, as well as promoting compassion and excellence of care for HD families.  Please take a look at “A Year In Review” under “Events”.

The fight goes on!  We will remain steadfast in our vision of an HD-free tomorrow.  Thank you for joining us in our fight to end Huntington’s disease, and here’s to a happy, peaceful and prosperous New Year! 



Frances Saldaña