Wednesday, January 28, 2009

It's Thyroid Awareness Month!

Sleepy looks at occasionally. It's full of good healthcare information and advocacy information provided by the large pharmaceutical manufacturers. One of those companies could well be the employer of the smart mind that will figure out ALS.
Featured on the PhRMA home page this month we learn that it's Thyroid Awareness Month and there is a link to an informative podcast on thyroid health.

Here is a link to all kinds of disease-specific podcasts provided on that site (go ahead and click)

Notice that anything is missing?

Where is ALS?

A disease that is a matter of life and death isn't there. Perhaps it didn't make the list because there aren't any drugs that really help ALS. Perhaps there aren't any drugs that really help ALS because people in the industry don't realize what a mystery and opportunity ALS is.
It would be nice to see the people who decided that May would be ALS Awareness Month to help get the word out as well as the thyroid advocates did.

Friday, January 23, 2009

Good News for SOD1 Mice

President-elect Obama has pledged to lift the seven-year ban on federal funding for embryonic stem-cell research — a boon for the field. But for some scientists, it almost doesn't matter. Researchers at Harvard and Columbia reported a milestone experiment in July, using a new method — one that doesn't require embryos at all — to generate the first motor neurons from stem cells in two elderly women with Lou Gehrig's disease, or ALS. The technique, developed by Kyoto University scientist Shinya Yamanaka in 2006, involves reprogramming a patient's ordinary skin cells to behave like stem cells, then coaxing them into the desired tissue-specific cells. Using the motor neurons created from ALS patients, scientists can now study the progress of the disease as the affected cells develop, degenerate and die in a dish — something researchers could never do before for such slow-moving conditions. Once scientists understand the development of ALS, they may be able to create more effective treatments, or perhaps even a cure.
Source, Time CNN by Alice Park

Saturday, January 17, 2009

Tap, Tap, Tap... Anybody Home?

The television ratings for the NFL conference championships are normally huge. It's winter. They stack the games up on a Sunday when people can entertain and relax and watch football and ads.

Tomorrow on prime time television, a team based near our nation's capital will be motivated by a former player with ALS. How often does ALS get that close to the eyes of millions of viewers?

An unscientific sampling this morning of the major ALS-focused not-for-profits' websites (which I'm sure get lots of visits) shows that none - not one - has any mention of O.J. Brigance or the Ravens on its home page. None. Nada. Zip.

Sleepy gets lots of emails from the same not-for-profits. So far nary a mention of a reason to pay attention to the Ravens tomorrow.

How hard would it be to salute a man with ALS who is an honorary co-captain and motivator for his team? How hard would it be to point out that this man has ALS, a disease that has hit millions of fine people just like O.J. Brigance? How hard is it to focus some attention to ALS on the big stage? How often do you get millions of eyes watching a pre-game coin toss featuring a man with the disease you're trying to bring out of the shadows and cure?

Anybody home?

You don't have to make a fundraising campaign out of it. You don't have to make a PSA to run at 2 a.m. You don't have to spend a cent to post a simple news item that PALS O.J. Brigance is motivating his Ravens and us all. It will be viewed. It will raise awareness. It's not that difficult.

Where else can you find millions of viewers who can learn something about ALS while stuffing themselves with nachos on a Sunday evening? Carpe diem. You snooze, people with ALS lose.

Thursday, January 15, 2009

The Power of a Persistent PALS

Last year a PALS from Oklahoma, Sherry Owens, persistently let her Senator know that she wasn't chopped liver and that the ALS Registry Act wasn't pork. The Tulsa World finally picked up her story and she articulated it well.

A few months later the ALS Registry Act was passed in spite of Senator Dr. Coburn's spite. A year later the Tulsa World continues to cite the ALS Registry Act as legislation that their cranky Senator had tried to block.

Every time they mention the ALS Registry in the paper, even simply in an example of Coburn's tactics, it helps raise ALS awareness. We should continue to thank Sherry Owens.

Sunday, January 11, 2009

Monkey see, Monkey do?

You're going to love this post and I assure you this is real Monkey Business. Monkeys may soon be placed as caregivers for quadriplegics including ALS patients, from an article printed by Disabled World Jan. 09.

I don't remember Christopher Reeve endorsing this type of Monkey Madness. Yes, Helping Hands, a 501(c)(3) has 10 full-time employees that includes six trainers. They go to Monkey College one hour a day in diapers and learn the tricks of caregiving.

Helping Hands covers the costs of the breeding, fostering, training and placing 12-15 monkeys a year. The costs total about $38,000 per monkey from birth to placement. Helping Hands educates thousands of young people annually through the Spinal Cord Injury Prevention Program (SCIPP). It takes at least three to five years to train each monkey and during that time the animal’s personality is closely observed so it can be placed with the right individual.

We've all heard of Gordo the space monkey who drowned on splash down and those "Trunk Monkeys" that delivered babies in the back seat or performed first aid at crash sites when released. Say it ain't so, the Monkey has come from carrying a tin cup for the organ grinder to being a graduated skilled caregiver?

Can you imagine? Your new medicare plan "M" now includes a Monkey caregiver. Such a cute idea but is this the level of care we need or deserve? Who changes the Monkeys diaper if we can't move? Even if these Monkeys graduated Harvard, there is no way they could handle the demands of ALS. I'm sure there are a few cute success stories but please, Helping Hands do ALS patients a favor and leave us out of your campaign, you're in over your head.

It's time for a reality check folks. Maybe we should have SCIPP train the Monkeys we have in congress to put real issues into law and then provide the funding. We need real care from qualified people, keep the real Monkeys in the zoo for entertainment on our day out.

For information on real Lifespan Respite Care by the ALS Association.

Remember; You may be wearing a big smile today but you are never out of the jungle.

Friday, January 9, 2009

ALS Stinks

There is an terrific column in today's WSJ from Carl Bialik, The Numbers Guy. His columns are always interesting and he has a gift for finding numbers challenges in everyday matters.

Today he speaks of the art and science of estimating the crowd expected for the inauguration. The last few paragraphs address the differences of opinions that some have regarding the commode requirements for the expected crowd. The inauguration committee is planning on 5,000 while others think that number is not going to provide adequate or pleasant results.

5,000... that's one of the numbers that people use when addressing the number of ALS deaths in a year. Most think that number is way low. Interesting analogy, eh?

We've always been lacking for a tangible way of representing the thousands of lives lost to ALS at the May ALS Advocacy Day activities. Perhaps we can get the inauguration committee to leave their 5,000 portable johns up until May... or better yet, until the cure is found. The cure could come much sooner if everyone in DC were to realize that ALS stinks.

Wednesday, January 7, 2009

Tuesday, January 6, 2009

Join The Embryonic Stem Cell Revival

More than ever your voice needs to be heard. There is also an International Research Letter to sign.
Coalition for the Advancement of Medical Research


Dear Editor:

A new President brings hope on many fronts. For me, I am most hopeful about positive, forward-thinking change in our nation's stem cell research policy. As someone who copes daily with losing another body function due to ALS (Lou Gehrig's disease), I call on President-elect Obama to take his support for embryonic stem cell research from the Senate to the White House and enact ethical and responsible federal policy around embryonic stem cell research so our nation's scientists can do their best work. Embryonic stem cell research has shown great hope these past ten years. It deserves the chance to show its real power in finding better treatments and cures.

Your Name
City, State