ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, April 27, 2010

Monday, April 26, 2010

Lessons For Life, Indeed





The two-DVD set finishes with a moving tribute to Watson's 'caddie for life', Bruce Edwards, who passed away in April 2004 from ALS, or Lou Gehrig's Disease. The tribute concludes with a song written and composed by Watson's stepdaughter, Kelly Paige. A portion of the sales of 'Lessons of a Lifetime' will go to help find a cure for this dreaded, life-ending disease. The 'Tom Watson: Lessons of a Lifetime' DVD set is now available for $49.95 at select golf and sporting goods retailers, pro shops and on-line at www.tomwatsondvd.com. The set is also available to purchase by telephone at 1-800-993-5589.

Here's A Caffeine Jolt To Kick Off ALS Awareness Month


Thanks, Dutch Bros., for putting ALS on the radar of thousands of customers!

For all who live in Dutch Bros. territory, on Friday, April 30, be there or be square.




For Better or For Worse ... or For ALS

ALS gives couples a lot more of the "for worse" part of those vows than they ever imagined on their wedding days.

Illinois is addressing an important public policy issue regarding caregivers and spousal status ...

http://www.pjstar.com/news/x1601208513/Program-allows-pay-for-caregiving-spouses


"This legislation was the right thing to do. It's one of those times when
common sense and public policy became one and the same."

What A Difference Eleven Years Make

The coach keeps on teaching his players about baseball... and about life. He teaches us all about the outrageous ALS.

This is a beautiful article by Phillip B. Wilson in the Indianapolis Star about a coach who took his team and a community to the Little League World Series and now deals with Lou Gehrig's Disease.

http://www.indystar.com/article/20100426/SPORTS/4260312/Fond-memories

Sunday, April 25, 2010

Piece by Piece, ALS Is Stealing Our Loved Ones

Get ready, world. May is ALS Awareness Month in the U.S. and the Piece by Piece campaign will help make you aware this year.




p.s. If you have lost a loved one to ALS, please help expand the Piece by Piece display and the message by remembering your loved on in the display in Washington, DC (and wherever it travels after). Sons and daughters, if you lost your Mom to ALS, what better way to remember her on this Mothers' Day! Sponsor a mannequin . We will not forget and we will not let the world forget.

Saturday, April 24, 2010

What Will You Do To Observe ALS Awareness Month In The U.S. This May?












a. Enlighten just one person each day in May about ALS. Strike up a conversation. Mention that there is still no known cause and still no cure.

b. Follow the
Piece by Piece display as it goes from Florida to Washington, DC, to get the attention of those who work in and visit our nation's capital.

c. Sponsor a mannequin in the Piece by Piece display to remember someone lost to ALS. Expand the tribute and continue to honor a loved one.

d. Join people worldwide in prayer the weekend of May 7-9
http://www.wehaveaprayer.org/

e. Participate in the
ALSA Advocacy Conference and Day on Capitol Hill

f. Write a letter to the editor of a newspaper explaining the urgency of dealing with the ALS problem, especially ALS in the military.

g. All of the above



Calling May "ALS Awareness Month" doesn't make it happen. We all need to raise the noise level about ALS so that the public understands the enormity of the problem.

Thank You, General

Friday, April 23, 2010

Here's A Nice Tribute to O.J. Brigance from John Harbaugh

Prepare Your Elevator Pitches To Strike Out ALS


The nice big headquarters hotel for the upcoming ALS Advocacy Conference attracts a lot of advocacy meetings. Here are some folks we know will be there at the same time as the ALS advocates -- American Academy of Family Practice. Can you think of a better group to have an elevated ALS awareness?

So if you're going to ALS Advocacy Days, please be relentless advocates. Have your elevator/traffic light/restaurant waiting/hotel desk pitch for ALS ready... "Do you know what ALS is? Lou Gehrig's Disease. Still no known cause. Still no cure."

The hotel staff sees hundreds of thousands of people interested in public policy. Please make sure that your concierge and housekeeper and check-in staff know why you're there. For all they know, "ALS" is American Llama Society. Teach them. Remind them. Give them red wristbands.

If you carry a conference bag, please make sure that the conference name is facing outward so that it can be read. If you have a hat or shirt that mentions ALS, you have the perfect apparel to get the word out. Shoot, write K ALS on your shoes and point to your feet.

The National Association or Realtors will be in Washington at the same time as the ALS advocates (we've seen them before and they're not a shy lot, so speak up) as will a large CARE national meeting. They will be competing for your legislators' time and attention. They are also part of a public that needs to learn about ALS.

Your advocacy mission starts as you leave your home. Please make sure that every airport and airline employee, every restaurant worker, every hotel guest, every public transit worker, and every convenience store cashier knows why you're going to Washington. Lou Gehrig's Disease. Still no known cause. Still no cure.

Please suggest that tourists you see in DC visit the Piece by Piece display on Mothers' Day at the Navy Memorial and on Tuesday just west of the United States Capitol Building. That is a perfect way for people visiting Washington to experience a moving message about ALS. Steer people to it.

For your day on Capitol Hill, please take extra "Strike Out ALS" stickers from the ALSA staff and stick them on every legislator and assistant you meet. Stick them on the bus drivers and the cafeteria cashiers.

This is just like a sales job. Be alert for opportunities. Be confident in your cause. Regardless of what your mother taught you, you must talk to strangers about ALS. Get the word out. It's up to you!

Thursday, April 22, 2010

Thanks, Ravens

This is not only a fundraiser. It's a valuable awareness-raiser.
http://www.pressboxonline.com/story.cfm?id=6136

Some Games Have More Than One Winner


FSU and ALS won this baseball game, and now you can have the shirts off the Seminoles' backs!
Bid early, bid often, beat ALS.
Thanks, Noles.

Monday, April 19, 2010

There Are Heroes and Then There Are Superheroes in the Battle Against ALS

We lost a superhero, Retired Brigadier General Thomas Mikolajcik. He fought for the rights of all of his fellow veterans whose military service came with a terrible fringe benefit -- Lou Gehrig's Disease. Thanks to General Mikolajcik, those veterans receive their disability benefits and the Department of Defense is very aware of the need for further research to explain the military-ALS connection.

http://www.postandcourier.com/news/2010/apr/18/advocate-fought-for-others/

http://www.alsa.org/files/pdf/ALS_Military_Paper.pdf

Sunday, April 18, 2010

Perhaps 60 Minutes Could Do A Whole Season on ALS


How many ways are there to take advantage of those with a quickly fatal disease with no known cause and no cure?

Tonight we see the tip of the iceberg on CBS on 60 Minutes.


There is the "snake oil" segment on stem cell opportunities that are presented to those with ALS every day. Before you dismiss patients as being gullible, think about how we are taught to fight disease and not give up. When proven medical science offers no cure, people grasp.

Then there is the segment on Al Pacino. What does that have to do with ALS, you ask? Featured in the Katie Couric interview is Al Pacino telling of his new role as Jack Kevorkian, a man who killed a man with ALS, Thomas Youk, on national television. Before you give Kevorkian a pass since the patient was willing, read up on pseudobulbar affect and frontal temporal dementia in ALS... then think about what constitutes a willing patient.

Perhaps on Monday morning there will be many conversations about the various ethical issues surrounding ALS.

Thursday, April 15, 2010

ALS Advocacy Days Are Coming Soon

Information on the ALSA conference --
http://tinyurl.com/y2pq5mu

Also, don't forget the compelling display to be shown in Washington, DC --
http://webfl.alsa.org/site/PageServer?pagename=FL_PiecebyPiecetoDc

Finally, there is another important movement for the weekend of May 7-9 --
http://www.wehaveaprayer.org/

Wednesday, April 7, 2010

And What Does This Mean For ALS Projects?

http://www.earthtimes.org/articles/show/faseb-releases-data-on-nih,1238538.shtml

FASEB Releases Data on NIH Research Funding Trends, Highlights the Need for
Sustained Funding in FY2011
Posted on : 2010-04-07 Author : Federation of
American Societies for Experimental Biology
News Category : PressRelease


BETHESDA, Md., April 7 /PRNewswire-USNewswire/ -- The Federation of
American Societies for Experimental Biology (FASEB) has released an updated
compilation of data on research funding at the National Institutes of Health
(NIH), as well as a statement about how current trends could affect biomedical
research in FY2011. "Based on projections from the President's budget summary,
we will see a significant decline in the number of grants in FY2011 at the
proposed funding level," said Howard Garrison, Ph.D., Director of FASEB's Office
of Public Affairs and author of the data resource. "This represents a reduction
of research capacity and the potential delay or interruption of promising new
efforts to find treatments and cures for life-threatening diseases."

"While it is clear the President recognized the importance of investing
in biomedical research, based on the 3.2 percent increase he proposed in his
FY2011 budget, the supplemental appropriations the agency received in FY2010 has
created a wealth of emerging opportunities that cannot be ignored," stated Mark
O. Lively, Ph.D., FASEB President, "We want to ensure that policymakers
understand that our progress against devastating conditions like cancer and
Alzheimer's disease depends on sustaining the momentum of our current
enterprise. This is more than just a trend in data; it is symbolic of a
diminishment of hope."

FASEB hopes the series of graphs and analysis,
which provides information on expenditures for research grants, grant numbers,
success rates, and average award sizes, will help policymakers understand the
case for sustained funding for biomedical research. To that end, FASEB has
recommended that Congress appropriate $37 billion for NIH in FY2011.

To view the FASEB NIH data resource, please visit:
http://www.faseb.org/Policy-and-Government-Affairs/Data-Compilations/NIH-Research-Funding-Trends.aspx

FASEB is composed of 23 societies with more than 90,000 members, making
it the largest coalition of biomedical research associations in the United
States. FASEB enhances the ability of scientists and engineers to improve -
through their research - the health, well-being, and productivity of all people.
Our mission is to advance health and welfare by promoting progress and education
in biological and biomedical sciences through service to our member societies
and collaborative advocacy.

SOURCE Federation of American Societies for
Experimental Biology

This Year There Are Many Ways To Be A Part Of ALS Advocacy Days in May

You can pray (and recruit others to join us in prayer). No travel required for this one.
http://www.wehaveaprayer.org

You can attend the ALSA conference activities
http://www.alsa.org/policy/alsday.cfm?CFID=5792372&CFTOKEN=8062565b32cd1e8d-D36E8EF1-188B-2E62-803B0824EA0C88AA

You can experience the Piece by Piece exhibit in person or sponsor a mannequin to honor a loved one (or better yet, do both)
http://webfl.alsa.org/site/PageServer?pagename=FL_PiecebyPiecetoDc

You can exercise democracy and call on your elected officials.

You can attend an ALS 101 presented by ALS TDI
http://www.als.net/ALS101/Default.aspx

Please pick some or all of the above.

Tuesday, April 6, 2010

Matt White's Words Being Delivered To The Butler Bulldogs

On Friday, April 2, 2010, at Conseco Fieldhouse in Indianapolis.

It includes lessons for life, lessons in ALS, and lessons for a team that doesn't quit.



The ALS Association Florida Chapter is maintaining a very nice compendium of media coverage of Matt White's trip to the Final Four at
http://webfl.alsa.org/site/PageServer?pagename=FL_MattWhite

Saturday, April 3, 2010

This Is A Beautiful Column On Hoops and ALS

...written by a man who obviously understands both...

http://www.indystar.com/apps/pbcs.dll/article?AID=/201004030245/SPORTS15/4030347

It is on the front page of the Final Four Indianapolis Star.

Friday, April 2, 2010

Thursday, April 1, 2010

The New York Times, Matt White, Butler, Final Four

Gravely Ill Butler Alumnus Joins His Team
By WILLIAM C. RHODEN
Published: April 1, 2010
Matt White, a former Butler track athlete who has amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, will watch Butler play its first Final Four game.

http://www.nytimes.com/2010/04/02/sports/ncaabasketball/02rhoden.html

This Is Going To Be A Good Weekend For ALS Awareness Because Bulldogs Never Quit