Huntington's Disease Society of America hosts hoop-a-thon

We at the Huntington's Disease Society of America, North Carolina Chapter, believe it is important to help families in North Carolina affected by Huntington's Disease, including the children. This year, we are putting on a youth-focused hoop-a-thon on Saturday, Feb. 25, from 8:30 am to noon at Gravelly Hills Middle School in Orange County. Geoff Schwarts of the Carolina Panthers will be participating as a team captain of one of the teams, and we will also be auctioning off a football signed by Carolina Panthers Quarterback Cam Newton. All proceeds will be going to the North Carolina Chapter of Huntington's Disease Society of America to help families in North Carolina affected by Huntington's Disease.
Huntington's disease is a genetic disorder which is caused by an expanded gene in a person's DNA. It is is also a neurodegenerative disorder, which means the condition affects the cells of the brain and causes damage over time. This stops the brain and body from working as well as they used to. As a result, people develop symptoms of Huntington's disease. These symptoms can be divided into three main types: involuntary movements, cognitive and behavioural. Currently, there is no cure for Huntington's, and there is a 50 percent chance of it being passed on to offspring. It is fatal. About 10 percent of people diagnosed with Huntington's have a juvenile form, which is much worse than adult onset.

Hagan introduces bill to accelerate patient access to targeted treatments

U.S. Sen. Kay R. Hagan (D—N.C.) introduced Wednesday, Feb. 15, the Transforming the Regulatory Environment to Accelerate Access to Treatments Act to get targeted treatments to patients with serious or life-threatening diseases in a quick and safe manner. The bill will be referred to the Senate Health, Education, Labor and Pensions Committee that oversees healthcare issues. Hagan is a member of the HELP Committee.
“The TREAT Act is a commonsense bill that will get innovative treatments to patients more quickly, while maintaining FDA’s high standards for safety and effectiveness,” said Hagan. “Accelerated approval processes helped HIV and cancer treatments advance by leaps and bounds in the 1990s. For patients suffering today from rare diseases for which there are no current treatments, medical advances can’t come fast enough. This legislation creates a consistent process and a clear and effective pathway at FDA that will encourage the development of innovative treatments for patients otherwise dependent on the uncertainty of medical breakthroughs.
“Furthermore, in this global economy, American innovation means American jobs. I will continue to work with my colleagues on both sides of the aisle to build support for this bill.”
The TREAT Act accelerates the review and approval process for medicines that:
• treat an unmet medical need,
• significantly advance the standard of care or
• are highly targeted therapies for serious or life-threatening diseases or conditions.
“NORD appreciates that Senator Hagan and her staff have listened to the concerns of rare disease patients in drafting this proposed legislation,” said Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders. “We look forward to working with Senator Hagan in support of this effort to accelerate the process for bringing safe, effective therapies to patients who desperately need them.”
Dr. Ellen Sigal, Chair & Founder of Friends of Cancer Research also commended Hagan's efforts.
“Friends of Cancer Research would like to applaud Senator Hagan for her continued support of the Food and Drug Administration," she said. "The bill she introduced today addresses some very important issues that will help the FDA enhance its scientific capacity, continue to review new treatments in a timely and efficient manner and assure that patients—suffering from serious illness and disease—have access to the safest and most effective therapies.”
The bill enhances FDA’s access to external scientific and medical expertise. It allows the FDA Commissioner to better utilize waivers when potential conflicts of interest are outweighed by the need to have input from leading medical and scientific experts. It also recommends that patient and disease research organizations have more representation on FDA advisory committees. This is critical in areas where research is on the cutting edge.
The TREAT Act advances regulatory science within the FDA. It ensures that drug sponsors are provided explanations when their drugs are turned down so that they might address concerns, improve the treatment and get approved medications to patients more quickly.
The TREAT Act updates the FDA mission statement to reflect FDA’s role in advancing medical innovation while promoting and strengthening the agency’s safety and effectiveness standards. The bill establishes new positions to promote innovation, integration and oversight as well as a Management Review Board to help FDA keep pace with advancing medical innovation and ensure that safety precautions are adhered to.
For more background on the TREAT Act, click here.

Chapel Hill teen launches fundraiser for Huntington's Disease Documentary

Starting Jan. 17, Kristen Powers, vice-president of the Chapel Hill High School Student Government, will launch an online fundraiser to raise money for a documentary chronicling her decision to get tested for Huntington's Disease, a genetic neurological brain disorder that destroys the victim’s ability to walk, talk, think and reason, eventually leading to premature death. The high school senior watched her mother lose an eight-year battle with the disease in January 2011; Powers has a 50 percent chance of inheriting the same fate.
The campaign will be spotlighted at IndieGoGo.com, an international crowd-funding platform. She will be hosting an online event called “$5K in a Day” on Jan. 26 to mobilize friends, family and supporters to help her reach the halfway point of her $10,000 fundraising campaign to fund the first phase of the documentary.
View Kristen's IndieGoGo page to learn more or to help.

Column: Who teaches us how to live—and die?

By: D.G. Martin
UNC-TV host

Alzheimer's.
Just the word scares you to death, doesn’t it?
A few years ago, I saw an article that described and gave examples of a new mental test that can make a very reliable preliminary diagnosis of early onset Alzheimer's.
I read every word. I answered every question. I will tell you why in a minute.
My family has a long interest in this disease. It slowly robs its victims of the ability to remember and to reason. Then it takes their personalities and slowly steals their lives away.
My father was a victim. After his death, my mother spent the last part of her life comforting the families of victims, organizing support groups and raising money to find the causes of Alzheimer's.
But there is more to it, more that explains why any article about Alzheimer's always stops me in my tracks.
More than 40 years ago my father, only 58 years old, learned he was afflicted with early onset Alzheimer's. A successful college president, widely admired and loved, he seemed happy with his work and ready for many years of additional service to his college and community.
It never seemed fair.
But, of course, the killer diseases that bring about premature death never seem fair.
Now, why did I try all the questions on that test that made the preliminary check for Alzheimer's? Well, we all worry sometimes, don't we? We worry about losing little bits of memory and wonder if perhaps, God forbid, it might be Alzheimer's?
I worry, too, but then I think about my dad, and it is more than worry.
I am older than my dad was when he found out about his Alzheimer's.
So I think about it more. It is not so much worrying about losing my memory. In fact, I did well on the test. Instead, I mourn the loss of what my father would have taught me had he been spared.
My father's life was full of monuments for me. He showed me how to live and serve with grace and honor. His example was a good one, all the way until Alzheimer’s brought him down.
Now I ask myself, "Who teaches me how to live the rest of my life? Whose example do I follow now?"
I miss not knowing how he would have dealt with all the things life brings in late middle age and retirement years. And now, when normal old age would almost certainly have brought about his death even if Alzheimer’s had not taken him so early, I miss most of all not having had the chance to watch and learn how he would have faced his normal aging and death.
You see, Alzheimer's stole not just his life. It stole his ability to face death and deal with it.
I wish I had his example. I think it would have been a good one. But I will never know.
Meanwhile, I can watch and learn from others.
Terry Sanford, for instance. When the former governor and senator received a diagnosis of "inoperable cancer," he turned it into a challenge to live to the fullest until his death in 1998. He figured out new ways to persuade people to support good causes. He seemed to be telling us, "I am going to live a lot longer than you might think, but however long it is, it is going to be good."
I like that example.
When the time comes, I hope I can follow it.
And, if I do, I know that my dad would be proud.


D.G. Martin hosts UNC-TV’s "North Carolina Bookwatch," which airs Fridays at 9:30 p.m and Sundays at 5 p.m. For more information or to view prior programs, visit the webpage at www.unctv.org/ncbookwatch.

Lyme disease fundraiser!

Whitney Corn, a Hillsborough native battling late-stage Lyme disease—which isn't covered by insurance—will hold a raffle and fundraiser on Saturday, July 9, at 4 p.m. at Schley Grange Hall. Money raised at the event will go toward funding Whitney's treatment as well as paying for various bills the family has had to put on hold to be able to pay medical fees.

To buy raffle tickets, make a donation or help in any way possible, call (919) 602-5555 for Kathy Corn, Whitney's mother. Raffle prizes include:

 First-place—a 55-inch Vizio LCD HD TV.

 Second-place—a photo sitting and 11-by-14 portrait donated by Kent Murray.

 Third-place—a full auto detail donated by Superior Auto Detail.

For more information on the Corn family's struggles, see the Wednesday, May 19, edition of the News of Orange or read it online. For further information about Whitney's ordeal and the politics of Lyme disease, see the Wednesday, July 6, edition of the News of Orange.

Help Whitney Corn battle Lyme

Whitney Corn of Hillsborough has been battling a disease for five years. Only in the last three months did doctors finally confirm that she had what Whitney and her mother had suspected all along—Lyme Disease. and late stage Lyme at this point. On top of her expensive medical treatment—which isn't covered by insurance—Whitney's father died two years ago this month. Not only did the stress of that loss send Whitney's disease into an accelerated downward spiral, it also put the family in financial jeopardy. The Corns lost the family business Whitney's parents had run together, since everything was in her father's name. They fell behind on bills trying to pay for the many, many, many doctor's visits, tests and medication as Whitney was continually misdiagnosed. 

To help mitigate the costs and ease the financial strain, Whitney and her mother—together with family and friends—are holding a raffle on July 9 at 4 p.m. at Schley Grange Hall. Free hot dog supper, karaoke and baseball will be offered in addition to the three raffle prizes: a 55=inch Vizio LCD HDTV for first place; a sitting and 11-by-14 portrait, valued at $300, donated by Kent Murray for second place; and a full auto detail, worth $150, donated by Superior Auto Detail.

For more information about the raffle, call (919) 602-5555. For more information about Whitney and her struggles, visit her website.