It's Thyroid Awareness Month!

Sleepy looks at http://www.phrma.org/ 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)

http://www.phrma.org/phrma_radio/

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.

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

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.

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.

http://www.tulsaworld.com/opinion/article.aspx?subjectid=61&articleid=20090115_61_A14_Oudyte158197

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.

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.

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.

Stop The Thief

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

LETTER TO THE EDITOR TEXT:

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.

Sincerely,
Your Name
City, State
Phone
E-mail

NFL Playoffs - All Eyes Could Be On ALS

The Ravens made it to the playoffs, and a Raven staff member and former player is a big motivator for that team, and he has ALS. O.J. Brigance needs to be on every news show and sports show hyping the playoffs. When a strapping athlete is cut down by this disease, it speaks volumes about the need for us (and the us grows when a zillion football fans are watching) to figure out the cause and cure.

Should it be of concern that ALS might be an occupational hazard of professional football?

Here are some names (if you know of others, please submit them in the comments and we'll add to the list) --

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Orlando Thomas
Wally Hilgenberg

This week provides a huge opportunity for some ALS advocacy. A team in the Washington, DC, area is in the playoffs and has a living PALS showing its players the meaning of courage.

Sleepy

P.S. Sleepy also sees a challenge that has plagued ALS advocacy efforts for years. Once a high-profile athlete or celebrity aligns with one of the many ALS not-for-profits for fundraising purposes, for some reason the others seem to drop the awareness opportunities that the athlete can provide on a big stage.

Ok, Packard Center, MDA, ALSA, MND Association, Extra Hands, ALSTDI, and others. Here is an opportunity to spread the word about a startling correlation of NFL players and ALS and a courageous PALS leading his team through the playoffs. The stage is big. It's time to be big enough for a big stage and know what to do with an opportunity... together or indivudually... but don't drop the ball. Just do it. It's not every week when you have a nation glued to the tube like this. We know you didn't plan for a Ravens playoff run in your annual p.r. plans, but you can be nimble and seize the opportunity.

R-E-S-P-E-C-T

Aretha is singing at the inauguration in January.

Here's an idea. Let's get her to become engaged in the ALS cause and go back to DC in May. We could use her at Advocacy Day because ALS sure gets no respect.

Just a little bit would be an improvement.

David Niven Would Be Proud

From the Orlando Sentinel

http://www.orlandosentinel.com/services/newspaper/printedition/friday/localandstate/orl-landing08dec12,0,664544.story

Pilots Carol Ann Garratt of Ocala and Carol Foy of Texas shattered an around-the-world speed record that had stood for 20 years. They also raised $145,000 for research on amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. ... "That mission is accomplished," said Garratt, who spent 18 months planning and $15,000 of her own money on the trip so donations could go to ALS research. "But the ALS mission is ongoing until we find a cure for that disease." ... A flight log and more details on the trip can be found at ALSworldflight.com.

Here's a pic of PALS David Niven in his "Around The World In 80 Days" days. That champagne sure beats Ensure.

Everything Will Be OK

Patrick O'Brien is still hanging on, working hard to finish his documentary. It's such a beautiful story and looks to be an amazing film. He needs all the help he can get to leave a film for his son to know him through. If you think you can help, please visit the Patrick O'Brien Foundation . I am not the only big Fan of this Man. ALS is being documented endlessly with this talented eye veiwing the finder of his wideangle lens. This is truly one serious ALS patient and advocate. It's my hope his dream is realized and thousands more can be touched as I.


The latest message from Patrick:

Hello friends,I have recently been the subject of some wonderful press and wanted to share it with all my supporters. Jason Tomassini from our local paper, the Gazette, did a fabulous piece which ended up on the front page. Thank you to Jason for doing such a wonderful job! The article may be viewed online here .

Shortly after the Gazette article was published, we were contacted by CBS News and got a spot on the local broadcast. Take a look at the segment here .

And finally, after much hard work, the trailer is online for all to see. Sundance may finally be on the horizon...

Thank you all for your continued support!

Love,
Patrick