Living the Healthy Way » National Institutes of Health

Living the Healthy Way » National Institutes of Health

Living the Healthy Way » National Institutes of Health

Healthy eating and fitness is the way to go.Sun, 07 Nov 2010 07:06:31 +0000enhourly1 attempts to cure disease with… DVD?, 02 Sep 2010 17:00:34 +0000Admin guest post by Kerry Westfall

At the age of 15, Kerry Westfall was diagnosed wih a rare neuromuscular disease called “”Friedreichs Ataxia,” which, According to the National Institutes of Health (, FA “symptoms that may occur include chest pain, shortness of breath, and heart palpitations. These symptoms are the result of various forms of heart disease that often accompany Friedreich’s ataxia, such as cardiomyopathy (enlargement of the heart), myocardial fibrosis (formation of fiber-like material in the muscles of the heart), and cardiac failure. Heart rhythm abnormalities such as tachycardia (fast heart rate) and heart block (impaired conduction of cardiac impulses within the heart) are also common. Life expectancy may be affected, and many people with Friedreich’s ataxia die in [early] adulthood from the associated heart disease, the most common cause of death. However, some people with less severe symptoms of Friedreichs ataxia live much longer, sometimes into their sixties or seventies.”

Image by Getty Images via @daylife

Kerry made a solemn oath to himself that ho would do everything he could possibly do to help find a cure for FA. “The first few years were tough,” says Kerry, “I felt like a wounded sheep amongst a pack of hungry wolves.” After High School, Kerry began using a wheelchair out of fear of further injury and emnarassment due to his awkward balance. I0 1996 the gene that causes Friedreichs Ataxia was discovered, which led to much excitement and hope for a cure.

“The impact of gene identification on our family and the importance to the establishment of FARA were profound. A local neurologist told us on an afternoon in March of 1997 that she was about 80 percent sure Keith had FA and suggested we send a blood sample for testing. That night, Raychel and I sat down at the computer and web searched Friedreich’s ataxia. We embraced and cried together as we saw all the bad news — very difficult prognosis with wheel chairs, damage to vision, hearing and speech, scoliosis and spinal fusion, diabetes, the serious heart condition so manifest in Keith, no treatment, no cure, no help, no hope, no organization devoted entirely to supporting research into FA.

Image by TeeJe (OFF 4 a fasting month) via Flickr

The one piece of good news we saw online that night was that the gene had been identified about twelve months earlier. We put two and two together and concluded that, with the gene identified, real progress could be made if there were a good organization whose single mission was to support research leading to treatments and a cure for FA. We decided that night to set out to establish such an organization. We began immediately speaking with other FA families, leading FA scientists and the NIH. We assembled a group of patient family members and scientists willing to serve as a Board of Directors, and prepared and filed the necessary paperwork. On September 28 of the following year (1998), we received our incorporation papers officially establishing FARA. The next day, we submitted to the NIH the lengthy request we had prepared for a grant to conduct the world’s first FA scientific conference. We also submitted to the IRS our request for non-profit status. Four months later, the IRS conditionally recognized FARA as a 501(c)(3) and about two months after that we conducted the First International Scientific Conference on Friedreich’s Ataxia. FARA was off to the races.” Says Ron Bartek, President Friedreich’s Ataxia Research Alliance (FARA).

This discovery has led the medical research community to label the FRDA gene, and the associated oxidative stress it invokes, as a ‘hot spot’ as many other disease researchers agree that developing a working model for curing FA and the associated oxidative stress-factors would serve as a baseline for many other research projects of many other diseases. In response to this, the Westfall Foundation was created to raise funds for medical research projects which will lead to cures and treatments of neuromuscular disease. The first fund raiser is a very motivating and inspiring exercise and health DVD called “Commit to Your Health.”

“Commit to Your Health” is an effective tool for accomplishing any goal or desire because the DVD was created,

produced and stars Kerry Westfall who suffers from the neuromuscular condition which he is trying to cure, Friedreichs Ataxia. Kerry is now 33-years old, while most of the people with FA die in their mid-twenties, he attributes his good-health to his commitment to health and exercise. “I work-out every day, I take pride in knowing that what I 9do now will service the future in a positive way.” Says Kerry.

Exercise has been shown to reduce the morbidity and mortality from many chronic diseases. Millions of Americans suffer from chronic illnesses that can be prevented or improved through regular physical activity:

12.6 million people have coronary heart disease

1.1 million people suffer from a heart attack in a given year

17 million people have diabetes; about 90% to 95% of cases are type 2 diabetes, which is associated with obesity and physical inactivity3; approximately 16 million people have ‘pre diabetes

107,000 people are newly diagnosed with colon cancer each year

300,000 people suffer from hip fractures each year

50 million people have high blood pressure

Nearly 50 million adults (between the ages of 20 and 74), or 27% of the adult population, are obese; overall more than 108 million adults, or 61% of the adult population are either obese or overweight.

The numbers speak for themselves. To watch a 5-minute trailer and get more information about the DVD, please

Lack of activity destroys the good condition of every human being, while movement and methodical physical exercise

save it and preserve it. ~Plato

Kerry Westfall is a passionate man devoted to improving life of

everyone he comes in contact with. In 1994, Kerry was diagnosed

with a debilitating neuromuscular disease called Friedreichs Ataxia.

This condition affects fine-motor function as well as his heart.

When he was diagnosed, he was devastated. He went in to a depression

for about two years. In 1996 he enrolled in Junior college, since

his family couldn''t afford to send him to a university. Kerry

found his true calling in programming and software development.

He grew fast as he was soon one of the top CSIS students in his

college. He had a particular talent in data modeling and search

algorithms in C++, he whizzed through programming classes and in

1998 was offered a teaching internship at his college

CSIS department. At about the same time, a company called

Microsoft had been told of his talent, impressed by his talent, t

hey flew him to Redmond, WA to talk with hiring managers.

He flew up and spoke with 14 interested groups and before

he flew home, an offer was made. A month later, he packed up

everything and went to washington to work for Microsoft corporation.

Friedreichs Ataxia is now in the treatment era, the IT program

which Kerry immeasurably contributed to is playing a very large part

in the FDA screening process and eventual approval of new candidates

to cure Friedreichs Ataxia... Kerry started the Westfall Foundation

in 2006. This public charity has a focus on direct contributions to

medical research . One of Kerry''s passions is fitness. So as his first

project, he is producing a film which details his workout regime, jointly

developed by his personal weight trainer, Ed Ferrell, and he. This film

has appearances by several leading doctors. The purpose of this film is

to show that disabled people can go to` a gym, and have a positive experience,

the film also features a nutritionist who details a proper diet as well as

supplements to use. A neurologist talks extensively on how to manage

conditions such as neuromuscular disease, and gives general tips on neuro-health

and what everyone should be doing. Finally, a doctor of Osteopathic Medicine

discusses bone-health as well as overall wellness and cardiovascular health.

Friedreich’s ataxia – All Information (

Ataxia – telangiectasia – All Information (

Peripheral neuropathy – All Information (