Greater Los Angeles Chapter 
| Greater Los Angeles Chapter |
Together We Can Accomplish Our Mission The Greater Los Angeles Chapter of Huntington's Disease Society of America is dedicated to provide support and care of those who suffer from Huntington's Disease, their families, and the Huntington's Disease Community. We are committed to the eradication of this disease through education, advocacy, family services and research. The Greater Los Angeles Chapter (HDSA/LA) serves the ten county region surrounding Los Angeles. This service area spreads from Fresno in the north through Orange County in southern California. Congratulations Everyone! Yesterday (12/06/07) was a major victory for everyone affected by Huntington’s Disease. An Advisory Committee to the Food and Drug Administration (FDA) voted unanimously to recommend approval of Tetrabenazine! If passed by the FDA, this will be the very first drug in the U.S. specifically approved for people with HD. This was a true milestone for the HDSA Community. It was your testimony, your written statements, your attendance and your support that made it clear to the committee members that they should vote their approval of this drug. We were elated to see more than 200 of our family members come out to Beltsville for the hearing, and that at certain points during the day the ballroom was standing room only. I would personally like to thank everyone that attended, as well as those throughout the country that took the time to add your names to our letter of support. In just over a week we collected more than 1,500 affirmations that were presented to the committee, showing that the support for Tetrabenazine yesterday reached much farther than the back of the crowded ballroom. Most of the members on the Advisory Committee had little or no personal experience with HD before this hearing. The presence of so many supporters, and the knowledge that for every person at the hearing there were hundreds more wishing they could be present, sent a strong message about the need for HD treatments and the determination of our community to see that need met. While the Advisory Committee ruling is not the final say in approving this drug, this is a big step forward. Though the FDA is not required to follow the advice of its advisory committees, it generally does. As one of the hearing attendees said, “we haven’t crossed the finish line yet,” but I am pleased to say that we’re taking great strides in getting there. This was a great example of how working as a community we can accomplish our goals. Thank you for a great Job!
Barbara T. Boyle HDSA Greater Los Angeles Chapter 2006 HD Walk pictures.  | Dear Friends, April 29, 2008 I hope this message finds you enjoying the spring weather and getting ready for some exciting HDSA events in the months ahead. Please click on the link to receive our latest HDSA E-Newsletter, April 2008 Issue, which contains news of recent events and upcoming ones -- including registration information and the Program for the upcoming National Convention in Pittsburgh, June 6-8. In addition you will find news on the recently passed GINA Bill (genetics anti-discrimination act) and an update on recent research news. I hope to see you in Pittsburgh for the Convention. Best regards, Barbara Boyle
| HDSA LA 5K Walk/Run Please make sure that you all mark your calendars for this year's HDSA-LA Walk/Run on September 20, 2008. Please notify all your friends, co-workers and family that we are in the planning phases and if you're interested in helping us plan an even bigger and better event this year, let me know. We need team captains, committee members, volunteers/helpers and walkers/runners.Lisa Gaetje Regional Development Director Southern California (866)920-0601 Cell: (951)768-3197 FAX: (951)848-9245 lgaetje@hdsa.org The Broad Foundation Donates $20 Million to UCLA Stem Cell Institute The Eli and Edythe Broad Foundation is donating $20 million to fund adult and embryonic stem cell research at UCLA, enhancing a program that brings together biologists, chemists, engineers, geneticists and other scientists to develop new and more effective treatments for cancer, HIV/AIDS, Parkinson's disease, metabolic disorders and other medical conditions. More UCI awarded $27.2 million for new stem cell building Irvine, Calif., May 7, 2008 UC Irvine was awarded $27.2 million today from the state to build a new stem cell research facility that will unify and strengthen the campus’s fast-growing stem cell biology program and serve as a hub for research in Southern California. MoreCalifornia Stem Cell Agency, Donors and 12 California Institutions Commit $1.1 Billion to Increase the Capacity for Stem Cell Research in California LOS ANGELES, Calif., May 7, 2008—The governing board of the California Institute for Regenerative Medicine (CIRM), the state’s stem cell agency, voted today to distribute $271 million to 12 institutions to build stem cell research facilities throughout California. The institutions committed an additional $560 million from charitable donations and their internal reserves, bringing the total statewide investment in new research space to $831 million. More"Cycle the Heartland for HD" is a 950 mile bicycle ride from Clinton, MO. to Pittsburgh, PA. for the 23rd Annual HDSA Convention (June 6-8, 2008). The purpose of the ride is to heighten public awareness of Huntington's Disease and to raise funds for family services and research towards a cure. Study at UCLA Needs HD Volunteers! Volunteers with Huntington's Disease or at risk for HD are needed for an important study at UCLA. The study is funded by the High Q Foundation (a private philanthropic foundation) that was established in 2002 with the mission of bringing together academia, industry, governmental agencies, and other funding organizations in the search for Huntington disease (HD) treatments. The Foundation supports numerous projects related to HD, including basic research, a drug-discovery program, and clinical studies. We are asking volunteers to have one QEEG, a simple test that involves putting electrodes on the scalp and measuring the electrical activity in the brain. The procedure is non-invasive, painless, and takes about 1 hour. The researchers are looking for biomarkers that could lead to the development of treatments to halt the disease. If you live in the Los Angeles area and wish to volunteer for the study or know someone with HD who is interested in research, please contact Michelle Abrams at 310/825-0797. We can provide assistance with transportation. Potential Treatment For Huntington's Disease Identified MassGeneral Institute for Neurodegenerative Disorders (MIND) researchers have identified a compound that may lead to a treatment that could protect against the effects of Huntington's Disease... more Promising new drug targets identified for Huntington's disease Research funded by the Wellcome Trust has provided a number of promising new drug targets for Huntington's disease, a neurodegenerative disease. Scientists at the University of Cambridge have identified a number of candidate drugs to investigate further which encourage cells to "eat" the malformed proteins that lead to the disease. Full article |