It's Never too Late

The quote below is taken from Eric Roth who adapted the script for the movie, "The Curious Case of Benjamin Buttons." The scene is "The letter to Caroline." I have changed a few words to make it more focused for my message about 'LIFE.".

     It’s never too late to be whoever you want to be.
     There's no time limit. Start whenever you want.

     You can change or stay the same.

     There are no rules to this thing.

     You can make the best or the worst of it.

     I hope you make the best of it.

     I hope you see things that startle you.
     I hope you feel things you never felt before.

     I hope you meet people who have a different point Of view.
     I hope you live a life you're proud of, and if you're not,

     I hope you have the courage to change it.

The above is a powerful statement of our ability to make a difference in the world. The Kennedy’s Disease Association and its website is one example. The Kennedy’s Disease Facebook Groups are other examples. There are also many other individuals who found ways to help those of us seeking answers or needing hope. And, we all need hope.  

The good news…

It is never too late—that is the important message. It gives us hope. 

FYI - you might enjoy reading this blog post on it never being too late. 

Walk-Assist is becoming a reality

Over the last five years I posted several articles on robotic devices that may someday be available to assist those of us living with Kennedy's Disease.The Nikkei Asian Review published an article on the latest success in this amazing area of medicine.

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Wearable walk-assist gets green light for sale in Japan

Cyberdyne's HAL for Medical Use, lower limb type, is designed to help patients with such conditions as ALS and muscular dystrophy.

TOKYO -- Japan's health ministry approved on Wednesday sale of a wearable walk-assist robot for use in medical facilities, underscoring the government's push to promote such products as part of growth strategy.
     The HAL for Medical Use, lower limb type, from startup Cyberdyne is the first wearable medical robot approved for sale in Japan.
     The product is designed for use in healthcare facilities by patients with eight incurable conditions including amyotrophic lateral sclerosis (ALS), muscular dystrophy, spinal muscular atrophy, and spinal and bulbar muscular atrophy, given height and weight requirements.
     Cyberdyne originated at the University of Tsukuba. Yoshiyuki Sankai, a professor there, developed the technology and heads the company as president.
     Sensors attached to the thigh and other parts of the body detect the weak signals from nervous system, and the motor-powered limbs facilitate the movement of the patient's joints by leading them in the desired direction. This helps the body remember how to walk, according to the company.
     The robot could delay the progress of a disorder, or help regain leg function.
     Clinical trials at a national hospital in Niigata Prefecture and elsewhere showed that 24 patients who underwent nine sessions of exercises over a three-month period could walk greater distances than those who did not undergo such exercises.
     "We hope to introduce it initially to eight hospitals including the Niigata hospital," Sankai said. If the treatment qualifies for insurance coverage, the company will work to expand the application to spinal cord conditions, too. ...

To read the entire article, follow this link:   http://asia.nikkei.com/Tech-Science/Tech/Wearable-walk-assist-gets-green-light-for-sale-in-Japan?page=1

Will CRISPR be the answer we have been hoping for?

I was reading the KDA Forum this afternoon and ran across this article in GIZMODO about CRISPR. It appears the possibilities are almost endless in regards to what you can use this for in the area of editing genomes. When I say endless, I mean finding a cure for Kennedy's Disease (SBMA). 

Excerpts from the article are shown below. Click on the title below to read the entire article.

Everything You Need to Know About CRISPR, the New Tool that Edits DNA

“CRISPR, a new genome editing tool, could transform the field of biology—and a recent study on genetically-engineered human embryos has converted this promise into media hype. But scientists have been tinkering with genomes for decades. Why is CRISPR suddenly such a big deal?

The short answer is that CRISPR allows scientists to edit genomes with unprecedented precision, efficiency, and flexibility. The past few years have seen a flurry of “firsts” with CRISPR, from creating monkeys with targeted mutations to preventing HIV infection in human cells. Earlier this month, Chinese scientists announced they applied the technique to nonviable human embryos, hinting at CRISPR’s potential to cure any genetic disease. And yes, it might even lead to designer babies. (Though, as the results of that study show, it’s still far from ready for the doctor’s office.)

In short, CRISPR is far better than older techniques for gene splicing and editing. ..."

Then, later in the article it mentioned the snipping of DNA sequences and the light bulb clicked on:  

"It is a more precise way of editing the genome...

As this point, you can start connecting the dots: Cas9 is an enzyme that snips DNA, and CRISPR is a collection of DNA sequences that tells Cas9 exactly where to snip. All biologists have to do is feed Cas9 the right sequence, called a guide RNA, and boom, you can cut and paste bits of DNA sequence into the genome wherever you want.”

This caught my attention near the end of the article. “… with CRISPR/Cas9, it’s theoretically possible to modify the genomes of any animal under the sun. That includes humans. CRISPR could one day hold the cure to any number of genetic diseases, but of course human genetic manipulation is ethically fraught and still far from becoming routine.”

Some Neurodegenerative Disorders Show Lower Cancer Risk

For all the negativity applied to having Kennedy’s Disease, occasionally research comes along reflecting something positive. MSN’s Health published the following report on April 11.

Huntington's Disease Linked to Reduced Cancer Risk in Study

Findings suggest shared genetic mechanism, researchers say
-- Mary Elizabeth Dallas --

WEDNESDAY, April 11 (HealthDay News) -- People who have Huntington's disease are much less likely to develop cancer than people without the inherited disorder, according to a new study that suggests the diseases share a common genetic mechanism.

The Swedish researchers found that those with Huntington's had a 53 percent lower risk of being diagnosed with cancer compared to the general population.

Besides Huntington's disease, the lower cancer risk applies to the other eight rare neurodegenerative disorders known as polyglutamine (polyQ) diseases. Those diseases, which result in the progressive degeneration of neurons involved in motor control, include spinobulbar muscular atrophy (also known as Kennedy's disease); dentatorubral-pallidoluysian atrophy; and six types of spinocerebellar ataxia.

From 1969 through 2008, the researchers identified 1,510 patients with Huntington's disease; 471 people with spinobulbar muscular atrophy; and 3,425 with hereditary ataxia, a substitute for spinocerebellar ataxia.
Cancer was diagnosed in 6 percent of the Huntington's patients, 7 percent of the spinobulbar muscular atrophy patients and 12 percent with hereditary ataxia.


The study, published online April 11 in The Lancet Oncology, determined those with spinobulbar muscular atrophy had a 35 percent lower risk of cancer, and patients with hereditary ataxia had a 23 percent lower risk. Before being diagnosed with a polyQ disease, the patient's risk of cancer was even lower, the researchers said.

"Our findings suggest a common mechanism in patients with polyQ diseases that protects against the development of cancer," Dr. Jianguang Ji and colleagues from Lund University and Skane University Hospital, in Sweden, wrote in a journal news release. "Future studies should investigate the specific biological mechanisms underlying the reduced cancer risk in patients with polyQ diseases," they concluded.