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.

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."

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.  

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.

Placido Lansbury or Sir Michael J. Hyde-Pierce?

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

Getting Attention!

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.

Your Chance to be an ALS Celebrity

The 2011 Neuro Film Festival is a contest by the American Academy of Neurology Foundation to raise awareness through film and video about brain disorders and the need to support for research into preventions, treatments, and cures. Submit your video entry by going to http://www.neurofilmfestival.com Deadline is February 15, 2011.



Related:  American Academy of Neurology-Mindfulneess Meditation

Beware of the Human Neuron Borer !

The emerald ash borer is an insect. An infestation can kill a healthy ash tree in two to five years. Sound familiar?

The UDSA, local agencies, and Purdue University have started a program to tag all healthy ash trees so that people are aware that each tree is at risk.

With ash trees, you can apply preventive treatments and be careful in moving firewood from infested trees to avoid spreading the borer. That part doesn't sound familiar, does it?

Next time we go to Washington, DC, for advocacy efforts, perhaps we should tag all the healthy assistants and legislators we talk to that they are at risk for ALS which can kill a healthy human specimen in two to five years.

People with ALS this year were playing golf and running and pursuing life's work and pleasures with gusto before they were diagnosed. They were not sickly people. They were like every healthy person on earth. It could be anyone next. Everyone is at risk.

Nice Job, Alzheimer's Association!

Today is World Alzheimer's Day.

I saw that in the newspaper. I saw that on the CBS Evening News (both in great advertisements and as a news item). I saw a new 2010 World Alzheimer's Report at www.alz.org .

The Alzheimer's Association traditionally does a great job of describing the costs of the disease - both human and dollar costs. When I heard an ad on the national evening news that said that Alzheimer's Disease could bankrupt Social Security, my curiosity was piqued.

Nice job, Alzheimer's Association. Another "A" disease could take lessons.

Fortunately People With ALS Are Good At Spelling

Senator Lisa Murkowski of Alaska has been the ALS cause's biggest friend on Capitol Hill. Behind the scenes she has worked with her colleagues of all political persuasions to enable legislation to help those with ALS and to add to ALS research.

If you have friends in Alaska, please spread the word and ask them to consider writing in her name on their November ballots. Without her in the Senate, the work of ALS advocacy gets a whole lot harder.

Seldom do we see prominent people wearing red Strike Out ALS wristbands. Here is a Senator who wears the wristband and a profound commitment to the cause. She hates ALS. We need that rage and commitment.

Thanks, CBS, For Asking A Very Good Question

"Dayne Crist: Is Notre Dame Quarterback Heroic Or Dumb?"

http://www.cbsnews.com/8301-504763_162-20016653-10391704.html

And trust me, nobody wanted the best qb in that game more than Sleepy. Thanks for asking a question that has bothered a lot of us, CBS. Perhaps it should have been directed to the team medical and coaching staffs, too.

We Need Our Registry! Over 16 Americans Croak From ALS Every Day (Or So We Think)

This morning we learned that our U.S. government conducts an important and thorough census of frogs every year.

WSJ.com http://on.wsj.com/dzaTVS

Why has it taken Acts of Congress, far too many years, repeated trips to Washington by advocates, thousands of emails, millions and millions and millions of dollars, and we still don't have a registry of cases of ALS in the United States?

We get it that the frog census is important. It seems that our government is motivated and smart about some things but not about others. The "others" are Americans who are lost every day to Lou Gehrig's Disease and whose clues are buried with them. The human ALS carnage continues and we still don't have a deliverable from the CDC so that the dots might be collected.

This is a wart on our national conscience.