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• CDC has launched ALS Registry Website, October 10, 2009
• Thank you for Helping Pass the ALS Registry Act, October 14, 2008
• ALS Registry Act , Strike Out ALS, March 31, 2008
• Ask Congress to Help Defeat ALS, August 31, 2006
• Green Bay Marathon Team Newsletter, Jun 10, 2006
• Green Bay Marathon Team Newsletter, May 16, 2006
• Green Bay Marathon Team Newsletter, May 6, 2006
• Green Bay Marathon Team Newsletter, April 25, 2006
• Green Bay Marathon Team Newsletter, April 11, 2006

Latest - ALS REGISTRY Website has been launched! October 10, 2009

The ALS Association, www.alsa.org, has just announced the establishment of a website for the National ALS Registry.

The national ALS registry will help identify the incidence and prevalence of ALS in the U.S. and collect data which is urgently needed for ALS research, disease management and the development of standards of care. The national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation's efforts to find a treatment and cure for ALS.

On October 8th, The Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR) launched the National ALS Registry website. This is the first phase of building a website that later will include an online portal where people with ALS can enroll in the ALS Registry.

The website is available at www.cdc.gov/als.

Many of you wrote your congressional representatives over the past few years on behalf of the ALS Registry Act. President Bush signed the Act last October. As always we thank you sincerely for your continuing support and dedication to raising awareness of Lou Gehrig's Disease - Amytrophic Lateral Sclerosis (ALS).

Thank You for Helping Pass the ALS Registry Act! October 14, 2008

Last week, the President signed the ALS Registry Act. Thank you so much for writing your congressional representatives in support of this bill. I believe this is a turning point in the fight to defeat ALS, finally giving the medical community critical data to begin effective research to find the causes and a cure.

A second heartfelt THANK YOU for supporting the "Steve's Stars" "Walk to Defeat ALS" team - they raised over $3,000 in donations for the Indiana Chapter of the ALS Association.

As always, we sincerely thank you for your continuing support and dedication to raising awareness of Lou Gehrig's Disease - Amytrophic Lateral Sclerosis (ALS).

Sue & Frank Engels
www.defeatingals.com
Raising Awareness and Funding for ALS Education and Research
In Memory of Steve J. Engels, May 24, 1956 - September 10, 2007
In Memory of Marie Geniesse Alger, May 15th, 1930 - March 8, 1988

ALS Registry Act; Strike Out ALS March 31, 2008

You have made a difference! The ALS Registry Act has moved to the Senate since we last asked for your support in the fall. Please consider joining us in supporting other ALS Awareness & Fundraising events across the US.

DO YOU KNOW THE SIGNIFICANCE OF MAY 2nd?
It was on this date in 1939 that Lou Gehrig took himself out of the line up ending the longest continuous playing streak in baseball. Cal Ripken has since the surpassed Gehrig but I would bet that without ALS, Gehrig's record would never have been broke. What better way to raise awareness than a baseball game! Read on...

STRIKE OUT ALS with CIRCLE-K
"Strike Out ALS" with the Circle-K group at William and Mary College in Williamsburg VA on Saturday April 19th. Join us in remembering Steve's love of baseball and consider sponsoring this 3rd Annual Baseball Game to raise money and awareness for Lou Gehrig's disease. We think this is a terrific way to raise money and awareness and are happy to support the students in their fund raising.

For more information, contact the Circle-K (part of Kiwanis International) at wmcki.als@gmail.com

HELP CHRISTOPHER AND HIS MOTHER
A very special group in Ohio called "4 Paws for Ability" trains and places service dogs with people who have disabilities. These dogs are especially helpful for families of autistic children. Christopher Burrows is autistic. And his Mommy has ALS. But he doesn't know that it will end his mother's life. Visit 4 PAWS FOR ABILITY and help his mother Claudia care for her son Christopher by sponsoring his multipurpose service dog.

For more information, please visit 4 Paws For Ability: www.4pawsforability.org/dream.html#CB

WALK TO D'FEET ALS
The national association's Walk to D'feet ALS is happening all over the nation. To find a walk near you, visit the ALS Association website at
www.alsa.org
Click on Walk to D'feet and enter your zipcode.

STATUS OF THE ALS REGISTRY ACT
The establishment of a national ALS registry will help identify the incidence and prevalence of ALS in the U.S. and collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation's efforts to find a treatment and cure for ALS.

The U.S. House of Representatives passed the ALS Registry Act by an overwhelming vote of 411-3 in November. Many of you wrote your representatives last fall concerning the Registry. We thank you for your support. The next hurdle is to pass the bill in the Senate.

To help pass the ALS Registry Act in the Senate, Bill # S.1382, visit the ALSA advocacy center here
http://tinyurl.com/2nya6l
and enter your zip code to write to your Senators. If you prefer to send your letter by U.S. Mail, visit our website to view a sample letter and to find your senator's postal address.

Send a Letter to Congress: www.defeatingals.com/lettertocongress.html

As always, we thank you for your continuing support and dedication to raising awareness of ALS.

Ask Congress to Help Defeat ALS, August 31, 2006

AUG 31, 2006: The "26 385 4 Defeating ALS" Team total donations have exceeded $7,500. Our efforts were highlighted in the Summer newsletter from the ALS Association of Indiana. If you did not received a copy of the newsletter in the mail, please let me know and I'll send you one. The article is also reprinted on our website at www.defeatingals.com/inthenews.html.

ASK THE 109TH CONGRESS TO HELP DEFEAT ALS

Frank and I would like to encourage you to tell your congressional representatives that funding ALS research is a top priority.

We support the ALS Association’s Public Policy Priorities and ask you to join us in this effort. We want the 109th Congress to:

• Pass the ALS Registry Act (H.R. 4033/S. 1353), legislation that would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide ALS registry.

• Include funding dedicated for ALS specific programs in the Fiscal Year 2007 Department of Defense (DOD) Appropriations Act.

• Support initiatives that will speed the development of new treatments for ALS.

To learn more about the ALSA Public Policy priorities, visit www.alsa.org/policy/priorities.cfm
View our personal letter to congress here and follow the link to find and contact your Senators.

It is unfathomable to us that in 64 years since Lou Gehrig died, little progress has been made in discovering a cause or cure. After my mom died in 1988, we were sure than if only it were 10 years later, there would be something that could be done. But, time has not worked to find a way to treat this disease. Together with the network of ALS Assocation chapters, we have a ray of hope for those affected by ALS.

Again, thank you all for your support, donations, prayers, for cheering for our team, and for your efforts to achieve greater awareness and recognition of this disease nationwide and worldwide!

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Green Bay Marathon Team Newsletter, June 10, 2006

JUN 10, 2006: Greetings from the "26 385 4 Defeating ALS" Team!

Marathon day was fine weather and our team went 253 miles 193 yards to raise awareness of ALS. To date, we've exceeded the stretch goal for fundraising ($5,000) by almost $2000! THANK YOU!

TEAM RESULTS

Over 50 people from 4 extended families came together in Green Bay for the weekend, including 19 runners and walkers. View our Photo Album from that weekend.
Photo credits: Fred & Joanne Alger, Edouard Marienbach, Sue Engels, Matt Marienbach

More News Coverage ..

.. the Green Bay Press Gazette published a follow-up article on our team's efforts.

www.defeatingals.com/inthenews.html

A BIG "Thank you" to local hosts

Mary Welch - Friday night get-together & accommodations in Glenview IL
Peter & Jill Geniesse - Green Bay accommodations
Fred & Joanne Alger - post-marathon team celebration at Krolls & Green Bay accommodations
Laurie & Jim Alger - Saturday Team Backyard BOOYAH/BBQ & Green Bay accommodations

The BOOYAH recipe can be found here -
www.colorfulplate.com/family/booyah.html

SUPPORT THE ALS REGISTRY

The ALS Registry bill, S. 1353, is currently stuck in committee. The bill seeks to create a national database to paint a bigger picture about the occurrence and progression of ALS in the U.S., in order to further research and treatments.

On our website, you will find a sample letter and the link to look up your senators email. It is all about awareness. Please write your senators - your letter WILL make a difference.
www.defeatingals.com/lettertocongress.html

THANKS TO EVERYONE FOR YOUR SUPPORT!

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Green Bay Marathon Team Newsletter, May 16, 2006

MAY 16, 2006: Greetings from the "26 385 4 Defeating ALS" Team!

So we are now within days of the event. The participant's minds are ready and we all hope that our bodies will follow. We have raised over $3000 to date. We have a stretch goal of hitting $5,000; if you can help it would be appreciated. Donations prior to the event help us all get out of bed on a Sunday in time for a 7AM start.

TEAM MEMBER FEATURE

We would like to thank another team member who is not participating in the event but many of you have talked to her. Sarah Schum is the person on the line at the ALS center in Indiana when you call in to make a donation. She has been a great help and we appreciate her effort. When you call in say hi to Sarah and wish her the best for her upcoming wedding.

Did you know ..

.. the team has received some great press from the Green Bay Press Gazette?

www.defeatingals.com/inthenews.html

FOLLOW OUR PROGESS via EMAIL

Find your favorite three participants bib numbers here, then click to the GB marathon site and track our progress on May 21st via email updates or text message updates. How great is this !

WRITE YOUR SENATOR

Please remember to write your senator about appropriating money for the ALS Registry. On our website, you will find a sample letter and the link to look up your senators email. It is all about awareness. Your letter will make a difference.

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Green Bay Marathon Team Newsletter, May 6, 2006

MAY 6, 2006: Greetings from the "26 385 4 Defeating ALS" Team!

We are traveling to Green Bay from as far as away as Texas and France to raise money for ALS research. Take a look at our team list, choose your favorite runner or walker and SPONSOR US!

TEAM MEMBER FEATURE

Our team goes beyond the boundaries of those actually walking or running. Stephanie Engels organized a dress down day at her Connecticut school to help raise money to support the team. This is a great awareness-raising effort because the more teachers know about this disease the more likely they will inspire the student who will cure it. Thanks Steph!

Our latest team member rounds out our international side with Matt Marienbach joining. Matt lives in Lyon France and is going to school in Montreal. He is staying on this side of the pond for a few extra weeks to join us in Green Bay and help support the cause.

Peter Lee Geniesse is a member of our team who searched for partners for the relay. As the deadline came closer he remained engaged but alas we couldn't pull together the team in time. Pete will still run the 5k to support the cause. He has been an active leader and cheer leader since we first started our team. If you and 3 or four others want to help him with the relay we may still be able to pull it off, but time is running out.

MAY IS ALS AWARENESS MONTH

The ALS Association public policy day in D.C. is enlightening members of Congress about this disease as we speak.

Help them by writing your Senator about the ALS Registry Act (S. 1353) which will provide a single national patient registry that is critical for the ALS medical researchers. We've put a sample letter on the website and how to contact your senator.

In addition to the events in Washington D.C. this month, the Indiana chapter is holding the Inaugural ALS Remembrance & Celebration of Life on Monday, May 15, 2006 at 7:30pm on Monument Circle, downtown Indianapolis. For more info, visit their web site: www.alsaindiana.org

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Green Bay Marathon Team Newsletter, April 25, 2006

APRIL 25, 2006: Greetings from the "26 385 4 Defeating ALS" Team!

Do you know the significance of May 2nd?

It was on this date in 1939 that Lou Gehrig took himself out of the line up ending the longest continuous playing streak in baseball. Cal Ripken has since surpassed Gehrig but I would bet that without ALS, Gehrig's record would stand today.

So please help us - Stop the disease that stopped the streak

TEAM MEMBER FEATURE

Mark Pratt is signed up to walk 13.1 miles. Rumor has it that he is even training to get this done. By his own admission he is not athletic, but pretty. We hope his good looks get him all the way.

Then there is my father, you can probably guess his age if you read the first paragraph of the last newsletter. Dad has always stayed in great shape but now the word is he has a brand new pair of shoes, so there is no stopping him. Some have said that he needs to break them in a little because they are so white, people see him coming for miles.

MAY IS ALS AWARENESS MONTH

We did not know this when we started this event but this is great news. The ALS foundation is asking all to write to your representative during ALS Awareness Month. We have often discussed that this disease is actually an underdog disease. It does not get a lot of notoriety or money. We want to help change that - with your help we can.

Did you know that there is not even a national data base of people who have or had ALS? How can we get close to a cure if we are not collecting all the data? The current administration took money out of the budget that was earmarked for creating this database.

Next issue, we will have a sample letter and link to write your Congressional representative about ALS Awareness and to support the national database.

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Green Bay Marathon Team Newsletter, April 11, 2006

APRIL 11, 2006: Greetings from the "26 385 4 Defeating ALS" Team!

We've received over $1,500 already from family and friends from Maine to Southern California. And an additional $300 of pledges. Your support inspires us and we'd like to share our progress with you as our team of 12 runners and walkers, ages 13 - 75, get ready for the Green Bay Marathon on May 21st.

TRAINING UPDATE from FRANK

A couple of words about training and what inspires the team.

First I want to acknowledge my sister Jana for her training efforts. I do not think she will be offended if I tell you she is not the most athletic person in the world, but she is determined to walk a half marathon and working hard at it. She trains everyday and although she has had some difficult times she remains determined. I will acknowledge other team members in the next newsletters.

I also train hard , waking up at 4:30 AM every weekday to go out & run. Saturdays & Sundays I sleep until 7:30 AM. On Saturdays I always put in what I call a long run, anywhere from 15 to 23 miles.Last Saturday I ran 18 miles in the rain just to see what it would be like if it rained on the day of the event. Well I learned it will be wet. I am really crazy.

The truth is , it is not about the event or the people participating. The event is something we hope inspires you all to become aware of ALS and to donate to help wipe it out. I can tell you that each time I hear we have received another donation that 4:30 alarm does not seem to early, I become a little more inspired.

We hope that each of you will be able to help our cause not only by learning and donating but by passing the word. We talk often of the "spider effect" as You tell someone who tells someone else and on and on it goes until we have enough people understanding and donating that we can get this disease stopped .

THE BEST VIEWING SPOTS (including VIRTUAL)

For spectators, find your favorite spot to cheer us on - in Green Bay, on the Web or from your cell phone! Green Bay was ranked one of the most fun marathons for a reason! Here's some of the 'party' spots along the way:
- First Baptist Church : music, face painting , refreshments
- West end of Depere drawbridge : dance to the music!
- Jimmy Buffett Parrot heads party : Mile 25 , Potts Ave
- Kroll's Bar & Grill : party near the finish line

On race day, follow your favorite marathoner through live, web-based e-mail and text message to your cell phone.

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