June 5, 2009 - 2009 HDSA NATIONAL CONVENTION The 2009 HDSA National Convention was held in Phoenix on Friday, June 5, 2009. Click HERE for photos and details of this event, which drew capacity crowds and featured many workshops and presentations. 2009 HDSA National Convention Phoenix, Arizona -- June 5, 2009

UPCOMING HD EVENTS May is Huntington's Disease Awareness Month HDSA is celebrating the month of May as Huntington's Disease Awareness month. Olivia Wilde, who plays "13" on the hit show House, and her co-star, Peter Jacobson ("Dr. Taub"), will be featured on the new TV and Print campaign. Both will appear in a 30-second PSA and Print Ad to raise awareness of HD and the impact of research and care programs (see below). To see Wilde and Jacobson's new commercial, go to www.hdsa.org/mayawareness As always, we urge you to talk with your friends and colleagues about Huntington's Disease and the research, care and education made possible by donations to HDSA. Our scientists continue to make valuable discoveries that help in the understanding and treatment of HD as well as other diseases. Plan to attend one of the upcoming HDSA events and encourage others to come with you. Visit www.hdsa.org to find other ways you can help provide support to families facing the daily challenges of HD. And PLEASE help us advocate on behalf of H.R. 678, the Huntington's Disease Parity Act of 2009. You can help pass this important legislation by contacting your Representative and urging him to vote for the passage of H.R. 678. Please visit www.capwiz.com/hdsa to find your Representative and send a letter in two simple steps. For the answers to your questions, or to request additional materials, please visit the HDSA website. Thank you for your valuable support!

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Third Annual Shoot for Hope The "Shoot for Hope" Sporting Clays Shotgun Fundraiser will be held on Sunday, May 3, 2009 at Northbrook Sports Club, 160 Sports Club Drive, Hainesville, Illinois. Public is welcome, including beginners and non-shooters. Sign-up begins at 8:30 a.m. Shooting begins promptly at 9:30 a.m. Cost is $75.00 per person, including lunch. Raffles and prizes will be awarded. For more information please contact Tom Dever at 847-816-9416 or email at rednck101@sbcglobal.net or tombamaxi@sbcglobal.net.

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HDSA 24th Annual Convention Huntington's Disease Society of America (HDSA) will hold its 24th annual convention on June 5th - 7th, 2009 at the Hyatt Regency Phoenix in Phoenix, Arizona. Click HERE to register now or for more details and information. For details and photos of past events, visit our Shoot for Hope section.

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2009 National Youth Alliance Silent Auction The HDSA National Youth Alliance (NYA) will once again hold a Silent Auction immediately before the Awards Banquet at the Annual HDSA Convention in Phoenix. Two-thirds of the funds raised will be used for HDSA research projects and one-third will support the NYA Annual Convention Scholarship Fund, which is open to any member who, due to financial hardship, needs support attending the convention. Without the help of family and friends who donate wonderful items each year, the Silent Auction would not be a success. Won't you please send a donation for this year's auction. Items can be anything from autographed sports memorabilia from major teams to homemade items or attic treasures you no longer use. Many people send baskets filled with items representing their state, store and restaurant gift certificates, handmade quilts, toys, puzzles, stuffed animals or anything else you can think of. To help with a donation or in other ways you can think of, please contact Staci Nicholas, the NYA Silent Auction Committee Chairperson at spacystace9@yahoo.com. For updates and other information visit the NYA's Silent Auction Website.

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2009 Drive Toward a Cure BMW You can purchase tickets for the 2009 BMW Sweepstakes by phone by calling 212-242-1968 ext. 210. You may also click HERE to purchase tickets online. The grand prize is a 2009 BMW 328i Sedan or $25,000 Cash. The sweepstakes is limited to only 2,500 tickets sold! Tickets are just $100 each and every third ticket is free. Winners will be drawn at the HDSA National Convention on June 6, 2009. Click HERE for details and official rules and HERE to view a large image of the vehicle.

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A Day with the Cubs Cubs Playoffs Game, 2008:  Thanks to the efforts of some wonderful friends, Mark and Mike had the pleasure of seeing one of the Cubs playoffs games in company of some pretty special people. Below is a picture of Mark with Tommy Lasorda, former manager of the L.A. Dodgers. For Mark, who is a dedicated Cubs fan, this was the event of a lifetime and an experience he'll never forget. There are other pics of Mark at Wrigley Field, where he met one of his favorite players, Ron Santo. You can see the photo album HERE.

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2008 Highwood All-Stars and Friends Fundraiser September 27, 2008: Local bands and friends joined together to raise over $2,500 for Hope for Huntington's at The Alley in Highwood, Illinois. The Highwood All-Stars, who organized the event, were joined by members of The Exchange, Rally Day, Fifth Story, The Ultrasonic Project and The Buckleys to support the cause at a fantastic show that featured an opening act, special offers and prizes from local businesses, and much more. The bands received rave reviews from everyone who attended this event. Click HERE to see a slide show of the All-Stars and Friends Fundraiser as well as some great pics of Mark from babyhood to present. We are, as always, amazed by the generosity of friends and neighbors who have rallied behind us during the past 8 years. Words cannot express our gratitude for their support and their relentless efforts to help us in our quest for a cure for HD.

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The Seventh Annual Hope for Huntington's Golf Classic September 25th, 2008: The Seventh Annual Hope for Huntington's Golf Classic was held at Glen Flora Country Club in Waukegan, Illinois, on Thursday, September 25th and generated over $93,000.00 to be used for research, to heighten awareness, and to provide better services for HD patients. About 120 golfers participated in the outing and 225 for the dinner and silent and live auctions. Click HERE for photos of the event. All photos are courtesy of: Rosa D. Stefani Distinct Ideas and Photography 847.432.8568 Cell: 847.924.6757 Fax: 847.780.4068 The date for this year's golf outing has not yet been set. For further information, or to make a donation, you may contact the Fiore family at 847-432-6397 or tombamaxi@sbcglobal.net.

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2008 Shoot for Hope June 1, 2008: The 2008 Shoot for Hope was held on Sunday, June 1st, 2008. With the weather cooperating, seventy-one shooters got together for a day of fun at Northbrook Gun Club in Northbrook, Illinois and raised over $8,000.00. As always, the funds will be used to support HDSA's research, education and family services programs. We are grateful to everyone who worked to organize and participated in this year's Shoot for Hope! Thank You! Click HERE for details and photos of this event.

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HD Updates: Below are links highlighting some of the more noteworthy events concerning HD and Hope for Huntington's. Much more information can be found in the latest HDSA Newsletter, including important research, advocacy and fundraising news and a recap of annual conventions. February 2009 ~ A Phase IIB clinical trial of the dopamine stabilizer ACR16 is now being conducted by the Huntington Study Group under the direction of lead investigator Karl Kieburtz, M.D. Approximately twenty sites are now accepting volunteer participants with more sites expected to come on board shortly. Visit the HDSA site for more information. February 2009 ~ The researchers conducting studies on the PCG-1 alpha gene are now conducting studies in a different patient population and are reporting similar findings in the second group. This reinforces the likelihood of the development of a treatment that will help delay onset and slow progression of HD. January 2009 ~ In August of 2008, the FDA announced approval of Xenazine (Tetrabenazine) for treatment of chorea symptoms in people (HD). Xenazine is the first treatment approved specifically for a sympton of HD. You cannot obtain it at your local pharmacy. Please click HERE for information on the proper steps to begin to take and to begin receiving Xenazine. For additional questions, please visit the Xenazine Information Center. January 2009 ~ Dr. Beverly Davidson's groundbreaking research has led many scientists to believe that the cure for HD will involve silencing the mutant gene. Using a mouse model in 2004 and again in 2005 she successfully silenced the HD gene using RNA interference. Click HERE details about Dr. Davidson's research. January 2009 ~ Researchers in Europe have identified a genetic modifier of age of onset that may point the way to a potential treatment for Huntington's Disease. The codes of the PGC-1 gene, which regulates mitochondria biogenesis and metabolism, are associated with delayed onset of the disease in people with the HD gene. After postponing the onset and slowing the progression of HD in mice through drug and genetic interventions, the hope is that the PGC-1 gene research will lead to succesful treatments that will delay the onset of the disease in human patients.

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About Us We are one of 30,000 American families who are affected by a degenerative disease called Huntington’s Disease. It is a genetic disease that can afflict an entire family and be passed on from generation to generation. Our 28 year old son is already showing the early signs of the disease, and our 31 year old daughter carries the defective gene as well, but is symptom free. Huntington's is a horrific disease, incapacitating the body and mind. However, recent research indicates that there is hope that a cure may one day be realized. To that end we have joined the efforts of the Huntington's Disease Society of America (HDSA) and have pledged ourselves to the goal of eradicating this devastating illness. Huntington's Disease (HD) is an inherited, progressively degenerative brain disorder that results in the loss of both mental faculties and physical control. Every person who inherits the HD gene will eventually develop the disease. HD does not skip generations; if one does not inherit the gene, one cannot pass it on. HD affects the individual's ability to think, speak and walk. Until recently, little was known or published about HD. In the last twenty years, much has been learned about the causes and effects of HD and about treatment, therapies, and techniques for managing the symptoms of the disease. In 1993, after a ten year search, scientists found the gene that causes HD, and important advances have flowed from this dramatic discovery. Many scientists are actively engaged in the search for effective treatments to stop or reverse the effects of HD, and eventually to cure it altogether. Because of the monies that you have helped us raise, we were able to help facilitate the opening of the Center of Excellence at Rush St. Luke Medical Center in Chicago. This center provides therapeutic and medical support to families with HD. For the past five years we have held the Hope for Huntington's Golf Classic at Glen Flora Country Club. Any amount we raise is matched dollar for dollar by an anonymous donor. The overwhelming support we have received from our community, friends, and family is proof that together we can make a difference. The funds that we have raised from these events help facilitate that work of research scientists who are directing their efforts toward a cure. To date we have raised nearly $1,000,000.00. In the wake of adversity, our family has found the strength to defy the odds. We, along with other families afflicted with Huntington's Disease, will not sit back and watch our lives be destroyed. This is the reason for our fundraising efforts. Again, we want to personally thank all of the researchers, scientists, and doctors whose valuable contributions have brought us closer to the goal of everyone involved with "Hope for Huntington's" - A CURE!!! On behalf of our family, we would like to express our sincere gratitude to all of you who have rallied to our aid to continue to raise awareness and raise funds for research and a better quality of life for Huntington's patients. Thank you for your constant support! Gratefully, Trisha Smrtnik Mark Smrtnik Mike and Nancy Fiore and the Huntington's Disease Society of America

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Making a Donation For further information, or to make a donation to be used towards research, please contact the HDSA at 800-345-HDSA or visit their site at http://www.hdsa.org. You can make a gift via their secure server or you can print the gift form and mail it to them. 87% of each unrestricted gift to HDSA will be used to support HDSA's research, education and family services programs. Donors also have the right to restrict their gifts for a specific program or programmatic area. When this is done, 100% of the restricted donation is used for that program. All cash contributions are deductible to the fullest extent of the law. Click HERE to see the exact breakdown of each donated dollar.

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Link to Us Want to help us spread the word about HD? You can do so by linking to our site using one of our banners and/or blinkies. Please visit our Graphics page and choose from the images we have to offer. Thank You!

We hope these pages help to answer some questions about Huntington's and lead to a better understanding of the importance of conquering this disease. Please be sure to view and sign our Guest Book. We would appreciate your comments.

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These pages were created and are maintained by Alice Manfredini © 2009. All rights reserved. Original images and/or text on this site may not be reproduced without written permission from the copyright owners and/or the webmaster.

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