Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

Kennedy’s Disease Knows No Boundaries...

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

The KDA News

2012 KDA News

[Note: KDA News archives are at the bottom of this page]

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Check back regularly for updates on KDA News
and Events, and other relevant information

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Also check out:

* Research Updates under "Promote Research"

--or by following this link: Research Updates

* And, don't forget about the KDA Store

02/16/12 - Tricky Britches performs their uplifting and original bluegrass song "A Rare One" in honor of Rare Disease Day

Watch Tricky Britches performing their uplifting and original bluegrass song "A Rare One", and learn about opportunities for rare disease patients to gain information, inspiration, and support through the network of Rare Disease Patient Communities, a joint initiative of NORD and Eurordis.

About 1 in 10 people suffer with a diagnosis of a rare disease, but since so few individuals compose each of the approximately 7000 rare disease groups, we are largely an invisible and unseen patient population.

http://www.youtube.com/watch?v=4Qdki0DroX0&feature=youtu.be

02/09/12 - The 2011 KDA Annual Report was published.

02/01/12 - Rare Disease Day is February 29

On the ultimate rare day---February 29th---millions of people around the world will be observing Rare Disease Day.

And in the U.S., more than 630 patient organizations, government agencies, research centers and companies who have signed up as "Rare Disease Day Partners" will join the National Organization for Rare Disorders (NORD) in supporting the day!

"This year marks the 5th anniversary of Rare Disease Day," said Peter L. Saltonstall, president and CEO of NORD. "The event has grown every year and was observed in more than 60 nations last year. The purpose is to raise awareness of rare diseases as an important public health issue."

Plans for this year include:

An all-day symposium at the National Institutes of Health (NIH) for patient organizations and researchers on Feb. 29
The first-ever Patient Advocacy Day to be hosted by the Food and Drug Administration (FDA) on March 1
A blitz of patient stories, photos, videos and blogs
Showing support by signing up on the national website as Rare Disease Day Partners (companies and organizations) or Ambassadors (individuals)

RDD_2012-1

Across the U.S., patients and their families will share their stories. Rare Disease Day Partners will host special awareness events and activities. And, all over the world, supporters will be voicing the same themes:

Rare diseases affect millions of people. (In the U.S. alone, an estimated 30 million people are affected.)
Getting a diagnosis is difficult and often takes many years.
Most rare diseases have no treatment. (Of the 7,000 diseases considered rare in the U.S., only about 200 have approved therapies.)
Many rare diseass are not being studied by medical researchers.
More than half of the patients are children, and rare diseases tend to be serious, complex and chronic.

"In addition to articulating the challenges, we'll be celebrating the partnership that exists between patients and those seeking to help them," Saltonstall said. The global theme for Rare Disease Day 2012 is "Solidarity". [Note: The above article was taken from a NORD email addressed to the KDA]

01/13/12 - New KDA Chat Room Schedule published

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There are now five chats each month.

A. The Regular 'Hosted' Public KDA Chat is held on the 1st Saturday of each month at 10:30 a.m. Eastern (USA) Time. The chat normally lasts one hour.

The chat room is scheduled for anyone who wishes to discuss what it is like living with Kennedy's Disease or to learn more about Kennedy's Disease, Kennedy's Disease research and other topics of interest.

B. The Wives, Caregivers, Carriers andSignificant Others KDA Chat is held on the 2nd Saturday of each month at 11:00 a.m. Eastern (USA) Time. The chat normally lasts one hour.

The chat room is scheduled for the wives, caregivers, carriers and significant others. This chat format allows individuals to discuss anonymously everyday issues that they face supporting someone living with Kennedy's Disease. There will be no transcripts published.

C. Three 'Unhosted' Public KDA Chats are held on the 3rd Saturday of each month. The chats normally last one hour.

1) Europe: 10:00 a.m. GMT (London).

2) North and South America: 10:30 a.m. Eastern Time (New York).

3) Pacific Rim: 10:00 a.m. Central Time (Darwin, Australia)

The chat room is open to anyone who wishes to discuss what it is like living with Kennedy's Disease. There will be no transcripts published.

01/08/12 - Laryngospasm; Sudden, Terrifying Difficulty Breathing

Laryngospasms (momre commonly referred to as 'Dry Drowning') are something that many of us living with Kennedy’s Disease experience. It can be frightening for the person having the spasm as well as anyone watching.

“Dr. Robert Bastian of Bastian Voice Institute explains laryngospasm with video of the larynx and a simulated attack. Laryngospasm is a sudden, often severe attack of difficulty breathing, typically lasting between 30 and 90 seconds. Usually the individual makes a frightening noise while trying to breathe in during the episode, which they often call a "choking attack. You will hear the types of noises often made by the person experiencing laryngospasm, and see what the vocal folds are doing at the same time.”

The video is less than five minutes long, but does a good job of explaining and showing what happens when we have a throat spasm. Video Link: http://www.youtube.com/watch?v=nPtdkqOLLP4

The simulation spasm clearly shows what we experience as the throat closes and then begins to relax. The sound that is made reminds me of my gasping for air when a spasm occurs.