All Diseases

MDA Labor Day Telethon Moves to Shorter Format

Sometimes, less is more — and that’s the strategy behind MDA’s decision to shave off more than 15 hours from next year’s Labor Day Telethon broadcast.

The new six-hour Telethon will run during the prime-time viewing hours of 6 p.m. to midnight (Eastern time) on the Sunday of Labor Day weekend, and will include the same time-tested mix of top entertainment, profiles of individuals and families with neuromuscular diseases, check presentations by MDA sponsors and live local segments.

Fly Out 2010 Takes Off

“Sometimes change starts with the little things, like sharing your story with a member of Congress.”

These words, spoken by MDA Health Care Service Coordinator Carolyn McNutt after an August meeting with Arkansas Rep. Mike Ross, succinctly capture the purpose of the MDA Fly Out and make clear why the fledgling program is so successful.

Fly Out 2010 Slideshow

This year's Fly Out was a resounding success, with dozens of MDA families, sponsors and advocates meeting with members of Congress and their staffs in states and districts from coast to coast (and even in Hawaii).

In all of these meetings, which took place in the home districts of more than 30 U.S. senators and representatives throughout August and September, families shared their stories and asked for support for legislation important to the neuromuscular community.

Vital Workforce Honored During Direct Support Professionals Week

Do you know an outstanding professional caregiver?  This would be a good week to show some special appreciation for the important work he or she does.

Spurred on by organizations that represent professional caregivers, the United States Senate has declared the week starting Sept. 12, 2010, to be the third annual National Direct Support Professionals Recognition Week. Events are planned across the country to celebrate and raise awareness of the work of direct support professionals, a group that includes personal care attendants and home health aides.

MDA Telethon Visits Past National Goodwill Ambassadors

Emergency Prep for People with Neuromuscular Disease

As storm season whips up, it’s wise to take stock of your emergency plan, especially if your mobility is limited.

Two veterans of weather emergencies — Barbara Twardowski of Mandeville, La. (who has Charcot-Marie-Tooth disease and uses a power chair) and Shelley Obrand of Davie, Fla. (who has a nonspecific form of muscular dystrophy and uses a power chair and respiratory assistance device) — offer these tips.

Card Issued for Air Travelers with Disabilities

The U.S. Department of Homeland Security has issued a notification card that should make commercial air travel a little easier for people with disabilities.

The blue, wallet-sized card allows people to discreetly notify airport security personnel of a disability, medical condition or medical device that might affect the screening they’re required to undergo before boarding a plane.

Feds Both Seek and Give Advice Re Disability Issues

Two federal agencies are seeking to improve conditions for people with disabilities, in one case by strengthening federal hiring regulations, and in the other by making health care facilities more accessible to people with mobility problems.

Improving employment

The U.S. Department of Labor, through its Office of Federal Contract Compliance Programs (OFCCP), is inviting public comments on ways to strengthen regulations covering the hiring of people with disabilities by federal contractors.

A 'Living Breathing Document': Thoughts on the ADA

The Americans with Disabilities Act— the ADA — turned 20 on July 26, 2010. How has this landmark civil rights legislation affected your daily life? Have you experienced discrimination in employment, in access or in attitude? What are some of the best changes that have occurred thanks to the ADA — and where do we still need to improve?

The ADA Turns 20

Two decades ago, on July 26, 1990, President George H.W. Bush signed into law the landmark civil rights legislation called the Americans with Disabilities Act, intended to eliminate barriers for people with disabilities.

Two decades later, daily life has become much more accessible and fairer in many ways, not only for people with disabilities but for everybody. And yet — in physical accessibility, in employment discrimination, in general public understanding — there still is a ways to go.

Pages