Saturday, January 30, 2010

The ALS Association Florida Chapter: Piece by Piece Campaign to Travel to Washington D.C.

The ALS Association Florida Chapter: Piece by Piece Campaign to Travel to Washington D.C.

Help Them Plan

We’ve just begun planning for this great opportunity, and we need your help. You can suggest a location for the Piece by Piece Display in Washington, D.C. With your help, we’ll do our best to secure the very best location possible, considering challenges that may be imposed by permitting and short notice.

Remember, the best suggestions will be large location with high amounts of foot-traffic.

Sunday, January 17, 2010

What Is That Ribbon, Mr. Smith?


There are 500 of us calling on our legislators today on Capitol Hill. Each of us is wearing a big red ribbon. Each ribbon represents 12 Americans who have died from ALS since we called on you a year ago.

Those are twelve precious lives represented on my ribbon. Twelve different Americans are represented on Mrs. Smith's ribbon. And more and more on every ribbon that you see on The Hill today. Please look around when you're in the cafeteria today. Every ribbon represents 12 different Americans who have been killed by ALS in the last twelve months. I wish I could tell you about my 12 -- a young mother, a veteran, an elderly musician, a firefighter, a teacher,...

That is why we must stop ALS. If we take another year to find the cause and cure, we'll be wearing two ribbons next year.

The cumulative toll of this disease is a national tragedy.

Thank you for asking, Senator. A lot of people ask about the ribbons.

Sunday, January 10, 2010

'This is one of the worst diseases on the Earth'

Historian and author, Tony Judt, speaks to Ed Pilkington about living and working with motor neuron disease and his reasons for considering euthanasia.

Motor neurone disease has left the historian Tony Judt quadriplegic and, he tells Ed Pilkington, has forced him to think about what it really means to be human. The result is an astonishing series of essays and a determination to get young people thinking collectively again.

'A bunch of dead muscles, thinking'

He is a Jew with no religion who has questioned the legitimacy of the state of Israel; a naturalised American citizen who is a consistent critic of overweening US power; a person of the left who subscribes to no leftist ideology. A Jew determined to get young people thinking collectivly again.

Friday, January 8, 2010

HMatW Podcast Series

Featuring National Hospice and Palliative Care Organization and The ALS Association

According to a recent study published by the National Alliance for Caregiving, there are at least 43.5 million caregivers age 18 and over, who provide unpaid care to an adult family member or friend who is age 50 years or older. Almost three-quarters of caregivers have been employed while they were assisting another person.

With so many working Americans serving in the role of caregiver, Community Health Charities has partnered with two leading national health charities, National Hospice and Palliative Care Organization and The ALS Association to produce a special podcast series on care giving through its Health Matters at WorkTM program.

HMatW Podcast Series

Monday, January 4, 2010

TennCare for Heather Bridges

To: Governor Phil Bredesen, Rep. Jim Cooper, Rep. Marsha Blackburn, Rep. Charles Michael Sargent, Rep. Beth Harwell, Rep. Gary Odom, Rep. Moore, Senator Jack Johnson, Senator Bob Corker, Sen. Douglas Henry, Rep. Janis Sontany
Sponsored by: Paige Barton-Cantrell

Why should Heather have to Beg?

Heather Bridges has ALS. She is completely quadriplegic that is, she cannot move her arms or legs. She has a little movement in her fingers, which enables her to use a computer. She has a tracheotomy and is on a ventilator part of the time, which breathes for her. She is totally dependent on others for all aspects of care, including shifting position every two hours to prevent skin breakdown and ulceration, toileting, transfers from bed to chair, and feeding. She cannot speak clearly, and cannot even call for help should something go wrong. In spite of this, she is bright and alert and quite eloquent by computer. Heather is a widow. She lost her husband in 2007. Her father James Shearon was murdered in a home invasion robbery more than a year ago. her only remaining family caregiver is her mother, who is employed at Vanderbilt. Heather's survivor benefits plus the disability benefits put her over the TennCare limit.

She obviously needs care 24 hours a day by someone who is trained to manage a tracheostomy, ventilator, and her other needs. Heather is requesting nursing care 11 hours a day, 5 days a week. Her mother will assume the rest of her care performing the work of three nurses (113 hours of care per week) plus her own full time job at Vanderbilt. Without this support, either Heather will have to be placed in long-term care there is only one such facility in Middle Tennessee or her mother will be forced to quit her job and the family will be completely indigent. Her need for care and the willingness of her family to assume the major portion of this care are very clear. Please help us get Heather the help she deserves!!!!

The more supporters, the better. Please Sign: TennCare for Heather Bridges