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The Smrtnik/Fiore Family
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HOPE
It's magic and it's free, It's not in a prescription, It's not in an IV.
It punctuates our laughter, It sparkles in our tears,
It simmers under sorrows, And dissipates our fears.
Do you know what Hope is? It's reaching past today,
It's dreaming of tomorrow, It's trying a new way,
It's pushing past impossible, It's pounding on the door,
It's questioning the Answers, It's always seeking more,
It's rumors of a breakthrough, It's whispers of a cure,
A rollercoaster ride Of remedies, unsure.
Do you know what Hope is? It's candy for the soul,
It's perfume for the spirit.
To share it, makes you Whole.
~ Author Unkown ~
Huntington's in the News
August 15, 2008 - Xenazine (Tetrabenazine) is first treatment specifically approved by FDA for a symptom of Huntington's Disease
The Food and Drug Administration has announced its approval of Xenazine (Tetrabenazine) specifically for the treatment of chorea symptoms in patients with Huntington's Disease. This is the long awaited result of the hard work and perseverance of the developers of Xenazine. Barbara Boyle, National Executive Director of the Huntington's Disease Society of America (HDSA), encourages all HD advocates to "use the excitement of this announcement as a motivation to work even harder to reach our objective of ending the devastation of Huntington's Disease."
The HDSA website will provide information on the future availability of Xenazine as soon as details are provided.
Click HERE for an article on Xenazine by Marsha Miller, or click HERE for the FDA announcement.
August 1, 2008 - The Huntington's Disease Parity Act (HR6259) Introduced
Legislation for HD has been introduced by Rep. Bob filner (D-CA). If and when it passes, it will increase access to Social Security and Medicare benefits for people with HD. Details HERE
You can help make this HR6259 a reality by calling your representative and asking him to co-sponsor the bill. To find your representative's contact information, visit http://www.house.gov.
July 31, 2008 - Drummer Trey Gray Working to Raise HD Awareness
Unlike Parkinson's Disease or breast cancer, HD is relatively rare and has had no celebrity spokespersons to help raise awareness. That will soon change because of Trey Gray, drummer for the well-known country music duo, Brooks & Dunn. Gray, who was diagnosed with HD three years ago, is committed to generating interest and support for the Tennessee chapter of HDSA. He will be participating in many national events scheduled for 2008, along with the First Annual Trey Gray Tee Off for a Cure Golf Tournament to be held in Nashville on September 20, 2008. To learn more about Trey Gray and the work he will be doing to raise HD awareness, visit his site at http://www.myspace.com/treygrayhd.
July 31, 2008 - HD Leads to Restaurant Ban
A British woman was banned from eating at her favorite restaurant because her HD symptoms were putting off customers. The owner, concerned about loss of business, claims that Catherine Blow's presence in the restaurant was driving away customers and causing some of them to leave when she arrived. Click HERE to read the rest of the story, which illustrates how symptoms of HD are often misunderstood, leading to unnecessary isolation.
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Seventh Annual Hope for Huntington's Golf Classic
The date for the 7th Annual Hope for Huntington's Golf Classic has been set for Thursday, September 25th, 2008. The event will again be held at Glen Flora Country Club, 2200 N. Sheridan Road, Waukegan, Illinois. For full details please see our Golf Classic page. You may contact the Fiore family at 847-432-6397 or tombamaxi@sbcglobal.net.
All Golf Classic photos courtesy of:
Rosa D. Stefani
Distinct Ideas and Photography
847.432.8568
Cell: 847.924.6757
Fax: 847.780.4068 |
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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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2007 A Banner Year for Hope for Huntington's
The Sixth Annual Hope for Huntington's Golf Classic was held at Glen Flora Country Club in Waukegan, Illinois, on Thursday, September 27th and generated over $91,000.00 to be used for research, to heighten awareness, and to provide better services for HD patients. Even the dark clouds and the threat of rain couldn't dampen the spirts of the enthusiastic golfers who participated in the outing; and the silent and live auctions, as always, provided great entertainment for the diners who arrived later in the evening. Click HERE to see photos of the event.
Only two days later, on September 29th, another fundraiser was held at the Northbrook Gun Club in Hainesville, Illinois. About 25 men and women from local shooting clubs in the area participated in a clay shooting event which netted approximately $3,000.00. The event was fun for everyone and plans are being made to hold another one in the summer of 2008.
Words cannot express our gratitude to the Highland Park High School faculty, staff, students, parents and community residents who worked tirelessly to raise $180,000.00 for Hope for Huntington's during their Annual Charity Drive. The amount raised, which was a record for the school, will have even greater impact because it will be matched by an anonymous donor for a grand total of $360,000.00. Thank you! Please visit the Highland Park School website to learn more about their Annual Charity Drive. You may also view video clips of the opening and closing ceremonies for the 2007 Annual Charity Drive by clicking on the links below.
We would also like to thank all of you who have worked so hard to make this year an unbelievable success for our organization. Your unwavering support and your determination to work alongside of us to conquer HD is amazing. We thank you with all our hearts for everything that you do throughout the year to generate funds for this cause.
Sincerely,
The Smrtnik/Fiore Family
Mike and Nancy
Trisha and Mark
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Click on one of the formats below to see videos of the opening and closing ceremonies of the Highland Park High School 2007 Annual Charity Drive. |
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.
- 08-15-08 ~ The FDA has announced its approval of Xenazine (Tetrabenazine) for treatment of chorea symptoms in people with Huntington's Disease (HD). Xenazine is the first treatment approved specifically for a sympton of HD. The HDSA website will be providing information on the future availability of Xenaxine as soon as details are provided.
- 07-10-08 ~ The FDA approves a Phase IIb clinical trial of ACR16 for HD patients
- 05-21-08 ~ President Bush signed the Genetic Information Nondiscrimination Act (GINA - H.R. 493). The bill protects the privacy of millions of Americans by 1) prohibiting insurance companies to use genetic information to determine premiums or reject coverage; and 2) making it illegal for employers to reject job applicants or deny promotions on the basis of genetic information.
- 03-19-08 ~ Annual charity drive at Highland Park High School in Illinois raises $180,000.00 for Hope for Huntington's.
- 12-6-07 ~ An Advisory Committee to the Food and Drug Administration (FDA) voted unanimously to recommend approval of Tetrabenazine, a drug which -- if passed by the FDA -- will be the first drug specifically approved for HD.
- 06-6-07 ~A young New Zealand scientist has managed to create the world's first large transgenic animal model for Huntington's disease, a devastating neurodegenerative disorder.
- 07-6-07 ~Better sleep may put Huntington's disease sufferers back on track.
- 05-16-07 ~ Subtle signs can help predict Huntington's Disease early.
- 05-16-07 ~ Ceregene announces promising Phase I results from gene therapy trial.
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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 27 year old son is already showing the early signs of the disease, and our 29 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 © 2007. 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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