Neuromuscular Diseases

Cure for Congressional Paralysis

With all the noise over stem-cell research, few people seem to have heard about or understood the importance of the Christopher Reeve Paralysis Act. This noncontroversial bill would improve the collaboration and coordination of federally funded paralysis research. It creates a clinical trial network to assess therapies designed to minimize life-threatening secondary complications, improve rehabilitation outcomes and ultimately cure paralysis.

Once you read the Paralysis Act, it's almost impossible to oppose it. But unfortunately many senators and representatives mistakenly assume it's a stem-cell bill. That leads supporters of embryonic stem-cell research to write it off as duplicate, unnecessary legislation. Opponents predictably reject the bill without reading it. Even the Christopher Reeve Foundation--whose mission is to find a cure for paralysis--is putting less effort into promoting this bill in order to focus on stem-cell legislation.

Local MDA telethon raises $271,996

Patrick and Michael Lorr and Brian Campbell made the most of their airtime Monday afternoon during the Muscular Dystrophy Association telethon with matching red, white and blue mohawks.

Wyoming telethon raises $163,070

The Wyoming results of the annual Jerry Lewis Muscular Dystrophy Association telethon may have been affected by the massive relief efforts for the victims of Hurricane Katrina, its district director said after the 22-hour event ended at 5 p.m. Monday.

This year, Wyoming donors pledged $163,070, about 3 percent less than the 2004 pledges of $168,002.

MDA Telethon raises $54.9 million

The Muscular Dystrophy Association's (Muscular Dystrophy Association) annual Jerry Lewis Labor Day Telethon has raised $54.9m.

A further $1m was raised for the victims of Hurricane Katrina and this money will be sent to the Salvation Army in Mississippi, Louisiana and Alabama, the Muscular Dystrophy Association confirmed.

CITGO'S MDA Efforts Highlighted by Telethon

CITGO Petroleum Corporation and its Venezuelan parent company, Petróleos de Venezuela, S.A., celebrate 20 years of participation in the annual Jerry Lewis Labor Day Telethon this weekend by presenting checks totaling $8 million to the Muscular Dystrophy Association (Muscular Dystrophy Association). The funds will be used in the continuing quest for a cure for neuromuscular diseases.

MDAs annual Labor Day Telethon

In a mass email, Muscular Dystrophy Association urged people to consider making a generous donation to the Salvation Army for Hurricane Katrina relief, and a $15 donation to kick-start the Telethon. Jerry Lewis and Casey Kasem will host the 40th annual Muscular Dystrophy Association Telethon beginning September 4th and continuing to the 5th. Check the station listings (.pdf) to find out what channel will be carrying it in your area or watch it online. Remember, if you donate online, you can earmark your donation to go directly to the neuromuscular disease or program of your choice.

Teen afflicted with MD illustrates cookbook

"I like the way (art) makes me feel--excited," [Donte] Young says.

His most recognized project has been cookbook illustrations for StarShine, the hospice of Cincinnati Children's Hospital Medical Center.

ALS Patients Offered Access to Cyberkinetics' BrainGate System in New Pilot Study at Massachusetts General Hospital

Cyberkinetics Neurotechnology Systems, Inc. today announced the start of a new pilot clinical study of the BrainGate Neural Interface System, a brain-computer interface, in individuals diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) or other progressive motor neuron diseases.

Genius mind gives Kiwi boys simple advice

He might have one of the world's greatest minds, but Professor Stephen Hawking's message to two Auckland boys last week was simple: "Don't give up."

Erin’s story

Besides the usual things new parents have to learn about a baby, Jennifer and Rob had to master a batch of life-saving machines.

Lawyers hold car wash for charity

A group of lawyers put away their legal briefs and picked up a rag and bucket for charity.

Event hits close to home for ALS patient

The exuberant celebration obviously was in Shipe's honor; nearly everyone in attendance either danced with the Mercersburg resident or hugged her.

Volunteers go out on a limb for MDA campers

For a third year the Plymouth resident has volunteered at the Muscular Dystrophy Association camp for kids with neuromuscular disorders in Lexington. While Kelm shied away from climbing the trees because of a fear of heights, she helped campers physically be able to accomplish the task in harnesses.

Progress Found In New Gene Therapy Research For Muscular Dystrophy

Researchers are showing excitement in the search for a cure for forms of Muscular Dystrophy with recent results in the health and extended life of mice with a form of congenital muscular dystrophy (CMD) via systemic gene therapy, according to the Muscular Dystrophy Association.

Motorcyclists Roar Into City For Major Convention Next Week

Additional activities during the rally, including a silent auction, will help raise funds to find a cure for neuromuscular disease. Over the past 25 years, the Harley-Davidson family of employees, dealers and riders has helped raise nearly $50 million for the Muscular Dystrophy Association.