September 21, 2005
The Fourth Annual Hope for Huntington's Golf Classic
The 4th Annual Hope for Huntington's Golf Classic was held at Glen Flora Country Club in Waukegan, Illinois on Wednesday, September 21st. Click HERE to read about this special event.
June 24-29, 2005
The 20th HDSA Convention
The 20th HDSA convention was held on June 24-29 in Atlanta, Georgia. The Fiore/Smrtnik Family was proud and happy to accept the Generation 2000 Fundraising Award in recognition of their efforts to support the research conducted by the HDSA Coalition for the Cure. Click HERE to see photos of the event as well as the text of the presentation by Barbara Boyle.
Support the Cure!
HD bracelets and car magnets now available. Show your support of a CURE for HD by purchasing a Care2Cure bracelet. or a Cure Huntington's Disease Car Magnet. Your order will help raise awareness as well as further the efforts of HDSA to find a cure for HD. Click HERE for details.
March 25, 2005
The Fourth Annual Hope for Huntington's Golf Classic
Preparations are underway for the Fourth Annual Hope for Huntington's Golf Classic, which will be held at Glen Flora Country Club in Waukegan, Illinois on Wednesday, September 21, 2005. Despite the enormous amount of planning and organization it takes to carry out each event, our spirits are buoyed by the overwhelming support from family, friends, and community businesses. We look forward to working together with all of you again!
January 15, 2005
How to Become an Advocate for HD
One of the best ways an advocate can help in the fight against HD is to raise awareness among members of Congress. Informing our elected representatives about HD and urging them to take an interest in the issue can lead to their support of legislation favorable to our cause. This type of advocacy may be done in writing by addressing a letter to our representatives in both House and Senate or in person by arranging a visit to the Congressman's office, either in Washington, D. C. or in one of their district offices. For sample letters and instructions for arranging an office visit with a member of Congress, please click HERE.
March 11, 2004
Photos of Morimoto Laboratory
Below are pictures that we took during our tour or Dr. Rick Morimoto's laboratory facilities at Northwestern University. To learn more about Dr. Morimoto and his staff, as well as the wonderful work they are doing, please visit their site at:
February 7, 2004
As you know, the U.S. Senate passed the Genetic Information Nondiscrimination Act (S.1053) in November just prior to recessing for the holidays. It is the first time that Congress has directly addressed the issue of genetic discrimination.
The House however HAS NOT moved this important piece of legislation to the floor for a vote. IT IS ESSENTIAL that you contact Representative Joe Barton (R-TX) who will be assuming the chairmanship of the Energy and Commerce Committee on February 16. It is this committee that must review and move the Genetic Information Nondiscrimination Bill to the floor of the House of Representatives for a vote.
For the contact information and a sample message, see our WHAT'S NEW page. Thank you!
Our tour of Dr. Rick Morimoto's lab at Northwestern University
On Thursday, February 5th, we took a tour of the laboratory facilities at Northwestern University, where research studies on Huntington's Disease are being conducted by Rick I. Morimoto, PhD. and his team. It was an overwhelming and informative experience. Dr. Morimoto and a coalition of scientists are studying HD and other neurological disorders. The information gathered by each research team is being shared among the scientists in hopes that their collaboration will lead to a cure for a wide range of diseases characterized by the loss of nerve function. Other such diseases include Lou Gehrig's disease, cystic fibrosis, Alzheimer's, Parkinson's, and the human form of mad cow disease. Dr. Morimoto (who is a Professor of Biochemistry, Molecular Biology, and Cell Biology at Northwestern University) and his research team are studying Huntington's Disease, but the experimental models can be used to study other neurodegenerative diseases that share the same molecular components. Hopefully, the sharing of information among the scientific coalition will help to further the search for a cure.
At Northwestern, we were happy to meet many of the members of Dr. Morimoto's team, including Soojin Kim, Undergraduate; Anat Ben-Zvi, Postdoctoral Fellow; Sue Fox, Research Technologist and Lab Manager; and Sandy Westerheide, Postdoctoral Fellow. Soojin Kim and Anat Ben-Zvi are currently working on a presentation for our website. This will allow us to present information about the mutant genes of the disease in a way that people will understand more about the nature of HD.
Dr. Morimoto and his team are working to develop drugs that counteract the harmful effects of the mutant huntingtin protein. Preventing the mutant huntingtin from aggregating can prevent the eventual destruction of brain cells. Currently, they are working with mice and a Chinese herbal drug that shows promise of reversing the effects of HD.
While visiting the facility, we took some digital photos which we plan on adding to the site as soon as possible. In the meantime, if you would like more information about Dr. Morimoto and the work he is conducting at Northwestern, please visit his site at:
The Third Annual Huntington's Golf Classic
Work on the Third Annual Huntington's Golf Classic has begun. Our planning committee has chosen Wednesday, September 29, 2004 as the date for the event, and preparations are already under way. We have chosen to continue the same format that has proved successful for the past two years and hope that this year's event will be even better than the last.
>From time to time, we will post information about our progress in this journal. We look forward to working with all of you who have worked to make this event a success in the past, and we want you to know how much we appreciate your support!
January 18, 2004
Pioneer Press Article
To view a newspaper article about the Second Annual Hope for Huntington's Golf Classic, click HERE