The Smrtnik/Fiore Family
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 DISEASE ADVOCATES: We have a lot to be thankful for this Thanksgiving 2012:
- The Huntington’s Disease Parity Act of 2011 (H.R. 718/S. 648) is outperforming most other disease-specific legislation introduced in this Congress.
- The Social Security Administration has granted a Compassionate Allowance (CAL) designation to juvenile onset HD and adult onset HD
- The Affordable Care Act, which includes a number of provisions that are favorable to individuals affected by HD, was upheld by the Supreme Court.
11-28-12: The Huntington’s Disease Parity Act (H.R. 718/S. 648)
As the year ends, we're grateful for the strong support the HD Parity Act (H.R.718) has received in the House. Although we currently have 146 cosponsors, we still need more. As you know, this bill is important for all people affected by HD. If enacted into law, it would make it easier for people with HD to receive Social Security disability and Medicare benefits. The bill will have to be reintroduced in both House and Senate once the year ends, so time is running out. Click HERE to contact your Representative about H.R. 718.
With the help of HD advocates and the help of our champion, Senator Gillibrand (D-NY), we secured introduction of the Parity Act in the Senate for the first time and currently have 12 Senators cosponsoring S. 648. Click HERE to contact your Senators about S. 648!
Please go to www.hdsa.org/ehb to learn more about HDSA efforts, where your state is in the process, and what you can do to help.
As always, we thank you for continuing support!
9-9-12: THE 16th ANNUAL CHICAGO HALF MARATHON & 5K RUN will be held on September 9th. If you are interested in joining the HDSA Team Hope to raise funds for Huntington's Disease, please Contact Sara at: http://rungingerfoxxxrun.blogspot.com/2012/02/call-to-arms.html
|Chicago Blackhawks Center Jake Dowell Talks about Huntington's Disease
In a one-on-one interview with Ken Campbell, Jake Dowell talks about living with the specter of Huntington's Disease while fulfilling his dream of playing professional hockey. Dowell, whose father and brother both have HD, has chosen not to be tested at this time. Please take the time to watch this INTERVIEW, where Dowell talks candidly about the impact HD has had on his family and the challenges he has endured since his father's diagnosis. Jake's story is also featured in the May 2, 2011 edition of The Hockey News magazine.
|HDSA 26th Annual Convention
The HDSA 26th Annual Convention will be held at the Sheraton Bloomington Hotel, Minneapolis South, Minneapolis, MN June 24-26, 2011. Click HERE for more information or contact Robert Coffey in HDSA's National Headquarters at 1-800-345-HDSA (4372) ext. 210 or via e-mail at firstname.lastname@example.org
|4-4-11 - Update of Huntington's Disease Parity Act
There are now 34 co-sponsors of the Huntington's Disease Parity Act (H.R. 718), but we still need the support of many more representatives and senators. We urge you to contact your Congressmen to encourage them to back this important legislation. You can do so with a few clicks of the mouse when you go to www.hdsa.org/takeaction.
The Huntington's Disease Parity Act of 2011 is important for all people affected by HD. If enacted into law, it would make it easier for people with HD to receive Social Security disability and Medicare benefits. If passed, H.R. 718 will:
- Direct the Social Security Administration (SSA) to revise its outdated medical and evaluation criteria for determining disability, thus enabling individuals who can no longer work due to HD to receive essential Social Security disability benefits.
- Waive the Medicare two year waiting period for individuals disabled by Huntington's Disease, thereby ensuring individuals receive critical health benefits and care in the early stages of the disease.
Please contact your reps, then ask your family and friends to do the same.
Thank you for your support!
Senator Kirsten Gillibrand (NY) to introduce the Huntington's Disease Parity Act!
On Friday, March 11, Senator Kirsten Gillibrand (D, NY) sent a letter urging her colleagues in the Senate to cosponsor the Huntington's Disease Parity Act of 2011. If approved, the new law would make it easier for HD patients to receive Social Security Disability benefits and Medicare coverage.
Click HERE to see the text of Senator Gillibrand's letter and to learn more about the provisions of the HD Parity Act of 2011.
Now is the time to contact your Senators and urge them to support this bill. You can contact them on your own or use the FORM provided on the HDSA site.
|THE 9TH ANNUAL HOPE FOR HUNTINGTON'S GOLF CLASSIC 2010
The 9th Annual Hope for Huntington's Golf Classic was held on September 25th at Glen Flora Country Club, Waukegan, IL. The event raised $45,000.00 to be used for research to heighten awareness and to provide better services for the HD patient. About 80 golfers participated and another 50 joined for dinner, silent and live auction.
THANK YOU AGAIN FOR YOUR ONGOING SUPPORT.
OUR ULTIMATE GOAL IS A CURE WITHIN OUR LIFETIME!
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 30 year old son is already showing the early signs of the disease, and our 34 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 Medical Center in Chicago. This center provides therapeutic and medical support to families with HD.
For the past nine 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 over $1,000,000.00.
In recognition of our efforts to raise funds for research and services to HD families, our family was presented the Generation 2000 Fundraising Award at the 20th HDSA Convention held in Atlanta, Georgia from July 24-29, 2005. Click HERE to see some photos of the event, as well as the text of the presentation by Barbara Boyle. Our story was also featured in a Chicago Sun Times Article on August 21, 2005.
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!
Trisha Smrtnik Peaslee
Mike and Nancy Fiore
and the Huntington's Disease Society of America
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.
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.
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