Thursday, October 28, 2010

People With ALS Count. Please Be Sure That They Are Counted!

People with ALS in the United States have never been counted. We really don't know how many people have ALS at any moment. We have relied on estimates from small studies and death certificates. We have buried any clues that could have been gleaned from medical histories or environmental exposures with the victims. That has been a national shame in many ways.

As of last week that changed, but it's important for people with ALS to know that they need to enroll in the CDC's ATSDR U.S. National ALS Registry (a function of the United States government) to insure that they are counted.

Please encourage all of those with ALS to go to https://wwwn.cdc.gov/als/Default.aspx to enroll. There is a great deal of white space on that page, so scroll down to get more information.

We'll never connect the dots if we don't start collecting the dots.

Having a U.S. National Registry at the CDC is an achievement, but it does no good unless patients know the importance to them and the investigation of ALS that they enroll. The mission is not accomplished until every person is counted. It's time to get out some bigger or better bullhorns to let every person with ALS know!

Friday, October 22, 2010

This Should Have Been A HUGE News Week


Let's see.

On Monday the news broke that the NFL and the NFLPA would provide benefits to former players diagnosed with ALS. That was huge. For a long time there have been the rumblings about the number of NFL players who have been afflicted. For the league and the players' association to agree to provide benefits is a both an acknowledgement and a compassionate gesture. Newscasts and print media have room for NFL news at this time of year. Radio waves are filled with talk of football. Where was the coverage of the 88 Plan and ALS? Where were the good questions that should have been asked about the names of the players and the history of the problem and the studies on athletes and the controversy of head trauma and college football stars who have also been afflicted and on and on? Has the story's shelf life now past without having raised any meaningful ALS awareness? Should organizations involved in the battle against ALS also have shown some prompt public gratitude for the NFL and NFLPA working together to address the problems of their players with ALS?

On Tuesday we got wind that the CDC's ALS Registry was to be launched on Wednesday. There was to be an embargo on news until 8 a.m. on Wednesday so that the CDC's ATSDR could make the announcement. What's the point of an embargo if you're not working with the media to make the story pop? Pfffft. There was very little media coverage on Wednesday... or on Thursday. This is an important repository for retaining information on people with ALS. Thousands of people have pleaded with legislators for a number of years to make this happen. Many of these advocates did not live to see the registry launch. We could have explained the outrageous fact to America that nobody had been counting noses of people with ALS until Wednesday. Why not tell the world about the United States taking leadership in surveillance of cases of ALS? This was a reason to tell America that we owe it to all Americans to figure out if there are environmental factors that can trigger death via ALS. This was a reason to talk about ALS.

This truly was a slow news week. We saw and read more than we wanted about Juan Williams and Joe Miller and Virginia Thomas and Lindsay Lohan and whether Roddy White trash talks more than Chad Ochocinco. This should have been a huge news week about something that is a matter of life and death -- ALS. The stories were there. Who was dishing them up for the media?

Great Caesar's ghost.

Wednesday, October 20, 2010

Eagle Has Landed!

The U.S. National ALS registry is finally available for online entry. Any people with ALS are urged to register themselves at https://wwwn.cdc.gov/als/AboutRegistry.aspx .
Thanks to all who made this possible, and please let anyone you know who has ALS that the Registry is available to retain their clues that may enable scientists to finally figure out the disease and to respect the magnitude of the problem.

Tuesday, October 19, 2010

Is There A New Message That Could Capture The Attention Of A Football-Crazed Nation?

Yesterday the news broke that the NFL and the NFLPA will provide benefits to players who have developed ALS.

I hope that perhaps they will also consider doing something simple and good that will put the need for more ALS research on our national radar. How about a series of ads during the playoffs and on the Superbowl that show some of those NFL alumni dealing with ALS along side some of our brave military veterans dealing with the same challenging disease? That would get our nation's attention. That would help people understand the need to get to the bottom of a disease that cuts short the lives of some of our most talented and brave Americans.

ALS should be a national outrage. Might the NFL and NFLPA help get the word out? Those who entertain and amaze us on Sundays have a terrible something in common with those who protect and amaze us every day.


Wednesday, October 13, 2010

Perhaps We Should Have Taken This Approach To Project Management At The CDC For The ALS Registry


Pretend that it's October, 2008. The ALS Registry Act has just been passed. You're working at the CDC to develop the registry.

There is a big box of hourglasses. Each represents the remaining life expectancy of a person with ALS on the day you start your project. They vary. None has as much sand as you would like. Pick one. That's your project timeline.

Most of the hourglasses would have run out of sand by now.


For Those With ALS Considering Stem Cell Clinical Trials At Hospital San José Tec de Monterrey

It's that World Stem Cell Summit time of year, and last year immediately after the WSCS there seemed to be a flurry of optimistic Summit attendees with ALS who embarked on the stem cell clinical trial at Hospital San José Tec de Monterrey which Stephen and Barbara Byer at ALS Worldwide www.alsworldwide.org have rated highly.

As new patients evaluate for yourselves whether this is the procedure for you, I encourage you check out www.patientslikeme.com . In the forum area (you'll need a login i.d.) there is a thread on the 2010 World Stem Cell Summit that has some interesting data analyses performed by people with ALS. It's interesting information that may add to your decision-making process.

"We are all so vulnerable to wanting to stop the discussion when we hit the information we want to hear."

Friday, October 8, 2010

ALS - The Long Goodbye

Hard to watch...but harder to live with.
This is a family's journey with Lou Gehrig's Disease.

Through Life we learn Suffering precedes Death.
Through ALS we learn Suffering engages the Family.  


video

Thursday, October 7, 2010

Family Caregivers Deserve A Pay Raise

As we approach the new rules of healthcare reform let us remember Caregivers are vital to ALS.  Until you are recognized as a genuine asset by healthcare providers, please follow these Caregiver Tips.

  •  Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
  •  Watch out for signs of depression, and don’t delay in getting professional help when you need it.
  •  When people offer to help, accept the offer and suggest specific things that they can do.
  •  Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
  •  There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
  •  Trust your instincts. Most of the time they’ll lead you in the right direction.
  •  Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
  •  Grieve for your losses, and then allow yourself to dream new dreams.
  •  Seek support from other caregivers. There is great strength in knowing you are not alone.
  •  Stand up for your rights as a caregiver and a citizen.

Tuesday, October 5, 2010

Placido Lansbury or Sir Michael J. Hyde-Pierce?





There is an interesting article at www.gettingattention.org this morning.

ALS advocates have longed for a big name, a star, a living Lou Gehrig, to help promote the cause. Yes, ALS needs to get some attention.

It seems to Sleepy that there are stars who are associated with causes and then there are superstars of causes. The superstars have the genuine fire and the rage. The superstars never let an opportunity to mention the cause slip by. The superstars know the value that they can deliver to a cause and they are driven to deliver 24x7. The superstars can talk off the script.

ALS doesn't need a star shining bright only when the spotlights are on. ALS needs a cause-superstar with a huge fire burning within. In the meantime, we ordinary advocates need to keep pushing for visibility and for progress and for new approaches.