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•  Berkshire Walk Totals; ALS Registry is Operational, Oct 20, 2010
•  About DefeatingALS; Berkshire Walk Progress, Sep 18, 2010
•  Lou Gehrig Day; Berkshire Walk Progress, Sep 7, 2010
•  Berkshire Walk Progress; Lou Gehrig Day; Ask Congress, Aug 10, 2010
•  Walk with Us in the Berkshires Walk To Defeat ALS, June 29, 2010
•  May is ALS Awareness Month - We Are On Facebook!, May 1, 2010

•  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 BERKSHIRE WALK TOTALS; ALS REGISTRY - 20OCT2010

Berkshire Walk to Defeat ALS - Wahconah Park, Pittsfield MA

On September 26th, over 230 people walked together in honor and in memory of loved ones, in support of their friends or family members affected by Lou Gehrig Disease, raising over $31,000.

We are awed by your support and the dedication of our local community. -
See the photos of some pretty wonderful people here

The volunteers were fabulous, greeting our walkers as they arrived, cutting fruit, handing out water, setting up the walk route with balloons and route markers, helping with the walk banners, directing traffic, shuttling tables, chairs and fruit to the Park Square rest stop. Even staying for cleanup duty! What a crew!

The walk results exceeded expectations, however, still not enough to defeat this terrible disease. We will continue our quest to raise awareness and funds for continued research for a cause and a cure. Donations to this years Berkshire walk are still being accepted online for just a few more days at - web.alsa.org/goto/sueengels

In our plans next?
Next summer, at Wahconah Park! With our dynamic local team, the Pittsfield Colonials. These guys gave us a very exciting playoff season with back-to-back wins in the bottom of the 9th inning. We love these guys! They will be back next summer. And so will we for the second Annual Lou Gehrig Day! Stay tuned....

Meanwhile, here are a few events coming up from other dedicated, wonderful people -

One Pitch Softball Tournament Oct 30-31
: In Dalton MA, just one town over from us, the Dalton Community Center will host an adult co-ed 1 pitch softball tournament on Oct 30th and 31st to benefit the ALS Association. The adult summer league is participating.
Interested? Call Dan McMahon at 413-684-0260 ext 15, for more info!

Jane from New Hampshire: Jane is training to run the Disney Marathon in January 2011 in memory of her brother. Support her Buck A Mile campaign to defeat ALS! See www.facebook.com/seejanerun4als

To stay aware of events across the nation, 'like' us on Facebook! We post events regularly and you may very well see one in your neighborhood!

Breaking News: Just as I was about to send this, I received this notice from the ALS Association - the National ALS Registry is now fully operational! (The Registry Act passed in Oct 2008) Every single person with ALS across the county will now be counted in the fight against Lou Gehrig Disease. For more information, please visit the ALSA website here - www.alsa.org/registry

Thank you from the bottom of our hearts for your contributions, support AND for writing Congress over the past 4 years to approve the funds to establish the registry! This means so much to us, we cannot express fully our appreciation. A simple thank you just doesn't seem like enough...

Sincerely,

Sue and Frank Engels
 20 October 2010, Pittsfield Massachusetts
www.defeatingals.com
In Memory of Steven J. Engels (1956 - 2007)
In Memory of Marie Geniesse Alger (1930 - 1988)

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ABOUT DEFEATING ALS; BERKSHIRE WALK PROGRESS - 18SEP2010

ABOUT DEFEATING ALS
At DefeatingALS.com, our main focus is to share our experience by helping families and friends quickly find support and information, to engage others in expanding awareness of Lou Gehrig disease and help raise funds to defeat it.

Through the website, we have personally answered over 50 emails requesting advice on how to help a family member or friend with ALS. We have posted, for free, fund-raising events, whether in Texas, California, New York or North Carolina. This year, we expanded our presence on the web with Facebook, reaching even more people across the U.S. who want to raise awareness of Lou Gehrig disease and defeat it.

Now, you can keep in touch with us on Facebook! Leave us a note and keep informed on events across the nation. You may even find an event in your neighborhood!

Find Us on Facebook here - www.facebook.com/DefeatingALS


BERKSHIRE WALK TO DEFEAT ALS
On September 26th, 13 walk teams will take to the streets of downtown Pittsfield, Massachusetts, to raise awareness and funds to defeat Lou Gehrig disease. After months of planning, we have brought together 135 people to walk in honor and in memory of loved ones, in support of friends and family affected by ALS.

Proceeds from our walk will benefit the ALS Association of Massachusetts, who provide free access to quality care, lead research and advance advocacy that increases funding for research and patient care.

ONLY 8 DAYS UNTIL WE WALK - Support our team with an online donation here -
web.alsa.org/goto/stella12stringers



UPDATE for
THE TRIBE OF LEVI
The Tribe of Levi has transformed to a 'virtual team' - recent events have caused them to cancel their travel plans to the Berkshires from Wisconsin. Their week rental in a Lee, MA condo is available. The team has generously offered to donate a portion of the proceeds from the condo rental, if we can rent the unit. For info on the rental, contact me, Sue Engels, at this email, ESue8215@aol.com .

As always, we thank you for your contributions, your support and dedication.

Sincerely,

Sue and Frank Engels
18 September 2010, Pittsfield Massachusetts
www.defeatingals.com
In Memory of Steven J. Engels (1956 - 2007)
In Memory of Marie Geniesse Alger (1930 - 1988)

 

LOU GEHRIG DAY; BERKSHIRE WALK PROGRESS - 7SEP2010

September 2010
Pittsfield MA

LOU GEHRIG DAY at WAHCONAH PARK
It was a great day of baseball on August 15th at historic Wahconah Park, starting with Lou Gehrigs famous "Luckiest Man" speech and ending with a Colonials win!

The "Berkshire Walk to Defeat ALS" group cheered the Pittsfield Colonials to a 8-7 win over the Brockton Rox. Many thanks to the Pittsfield Colonials Baseball Club and the downtown Pittsfield businesses that donated gift certificates - Persnickety Toys, New Berry Place, Chapters Bookstore and Ahava Amore Cafe. And congratulations to the raffle winners!

OUR FAMILY WALK TEAMS

Our family teams are 2 of 13 walk teams. Our walk is truly making a difference in raising awareness and funds to defeat Lou Gehrigs disease.  To date, there are 117 walkers registered for the Sep 29th Berkshire walk!

ABOUT THE STELLA STRINGERS
Our team is named in memory of Leadbelly (1889-1949), King of the Stella 12 String Guitar. We walk in memory of Frank's brother, Steven Engels, and my mother, Marie Geniesse Alger. Team captains are Frank and Sue Engels.
Pete Seeger, of the Weavers, said of Leadbelly "It’s a pure tragedy he didn’t live another six months, because all his dreams as a performer would have come true." The Weavers sold 2 million copies of Lead Belly's "Goodnight, Irene" shortly after his death from Lou Gehrigs disease in 1949.  Learn more about Lead Belly.

Join or donate to the Stella 12 Stringers Team

ABOUT THE TRIBE OF LEVI
The team is named after Sue's maternal grandfather. My Uncle Peter is team captain along with my aunt, Jill Geniesse, of Neenah WI. They are traveling to the beautiful Berkshires to join us for the walk in memory of my mother. Levi's Tribe includes my mom's 2 sisters and 2 brothers and many others in the extended family. The team recently won tickets to the Big E for their team's fundraising efforts!

Join or donate to the Tribe of Levi

This effort has taught me that there are more lives affected by ALS than anyone knows. As we meet others affected by this cruel disease, your continuing support and dedication to raising awareness means the world to us. And to them.

Our sincerest thanks,

Sue and Frank Engels
7 September 2010, Pittsfield Massachusetts
www.defeatingals.com
In Memory of Steven J. Engels (1956 - 2007)
In Memory of Marie Geniesse Alger (1930 - 1988)

Become a Fan of DefeatingALS on Facebook:
www.facebook.com/DefeatingALS

 

BERKSHIRE WALK PROGRESS; LOU GEHRIG DAY; ASK CONGRESS - 10AUG2010

BERKSHIRE WALK PROGRESS; LOU GEHRIG DAY; ASK CONGRESS
Todays count : 11 teams and 52 walkers!
The Pittsfield City Sluggers are neck-and-neck with the SGC Women Golfers at 10 walkers each.
The SGC Women Golfers are gaining ground on The Stella 12 Stringers who are leading the pack with $1,135 raised.

Vote for your favorite team by making a donation at web.alsa.org/goto/stella12stringers
(That's us! The Stella 12 Stringers ;-)

What People Say About ALS
Lately Frank and I have been talking to a lot of people about ALS. Many have a vague idea of the disease. Some know more than others. When we tell our story, all are shocked that a single disease could cause such deep sorrow. I feel bad sometimes, because making people sad is not what I want to do. I want to defeat Lou Gehrig disease.

We are sadly surprised when people tell us they know about the disease and they are joining our effort because a loved one has been diagnosed or has died. Olivia's nephew in Florida. Tricia's cousin. Lyn's brother. Joan's son. Terri's brother. One person said "I am the type of person that, when someone I love becomes ill, I learn as much as I can about the disease. I started to learn about ALS... and stopped. I don't want to know." But she does want to help raise funds to find a cause and a cure.

Lou Gehrig Day at Historic Wahconah Park
Last time we told about Lou Gehrig making his professional debut with the Hartford Senators at historic Wahconah Park in Pittsfield, where he hit a home run into the Housatonic River.  Today, the Pittsfield Colonials play in the park. This Sunday, August 15th, we are bringing Lou Gehrig Day to the ballpark! Festivities start at 1:30 PM. Game begins at 2 PM.

Registered walkers get free tickets to the game! Check out the event here - www.defeatingals.com/berkshirewalk.html
There will be an autograph session with the ballplayers, raffle tickets for gift certificates from local businesses, a walk registration table, an orator reading the Luckiest Man speech and more...

Ask Congress To Increase Research Funding
The ALSA Advocacy Action Center (http://capwiz.com/alsa/home/) has a end-of-summer campaign to urge our Senators to increase funding for the ALSRP in 2011. This ALS Research Program at the Department of Defense is a vital program specifically designed to find a treatment for ALS. Please contact your Senator Today!

As always, we sincerely thank you for your continuing support and dedication to raising awareness of Lou Gehrig Disease. Many thanks to those who have contributed to our team. We are putting our hearts and souls into this effort and it means so much to us.

 

WALK WITH US in the BERKSHIRES Walk To Defeat ALS    Jun 29, 2010

THE FIRST BERKSHIRE WALK TO DEFEAT ALS
DefeatingALS.com is joining forces with the ALS Association - Massachusetts Chapter for the first Berkshire Walk To Defeat ALS.

As many of you know, Frank and I are both very active on social networks. In April, Terri Handler, a development associate with ALSA-MA, invited us to connect on LinkedIn and meet with her to discuss organizing a Walk here in the Berkshire County. Like us, Terri and her husband have lived many places but kept their Berkshire home. Terri's reasons for working at ALSA-MA are personal and professional. Shortly after we met, Terri's brother lost his battle with ALS. David was 49.

Terri's boundless optimism and professionalism impressed us. We had so much wanted to followup on the Green Bay Marathon with another event that would again inspire family, friends and strangers, to come together as a group in a spirit of support and hope. Terri has inspired us and asked us to join the ALSA-MA to bring the Walk to the Berkshires. We gladly said 'yes' for Terri, her brother, Frank's brother and my mother. Sue will co-chair the event.

The Berkshires are a beautiful place. We invite you to come walk with us, in person or in spirit, on Sunday September 26th at historic Wahconah Park*, Pittsfield, Massachusetts.

We are currently looking for team captains and corporate sponsors. To start a team, visit www.WalkToDefeatALS.org, select Massachusetts, click on Berkshire Walk. To receive corporate sponsorship information, contact us.

SUPPORT THE STELLA 12 STRINGERS
In addition to co-chairing the event, our walk team, The Stella 12 Stringers, will raise awareness and stretch to surpass the level of contributions from the Green Bay Marathon event. Our team is named in honor of Lead Belly(1889-1949), King of the 12 String Guitar.

Join or Donate to our team: visit http://web.alsa.org/goto/stella12stringers

BECOME A FACEBOOK FAN
We have connected with some wonderful people across the nation through our new Facebook page since May 1st. Are you on Facebook? Stay in touch with our Walk progress. Find us on Facebook!

As always we thank you sincerely for your continuing support and dedication to raising awareness of Lou Gehrig's Disease - Amytrophic Lateral Sclerosis (ALS). We would be please to have you join us, in any way you choose, at the Berkshire Walk to Defeat ALS.

Sincerely,

Frank and Sue Engels

* Constructed in 1919, the 3,500 seating capacity ballpark has been home to professional baseball for nearly 100 years and remains one of the last wooden grandstand pro ballparks in the country. More than 200 former Pittsfield minor league ballplayers have played in the Major Leagues, including Lou Gehrig who once hit a home run into the Housatonic River behind the right field fence.

 

ALS AWARENESS MONTH - We Are on Facebook!       May 1, 2010

DefeatingALS.com is now on Facebook!
Our main focus has been to share our experience by helping families and friends quickly find support and information, to engage others in expanding awareness of Lou Gehrigs disease and help them raise funds to defeat it. With our new Facebook page, we will continue to help others find awareness and fund-raising resources in their local area and advertise those events for free.

Do You Know the Significance of May 2nd?
Visit our new Facebook page to find out!

You do NOT have to be a Facebook member to view the page. If you are a Facebook member, it would be great if you would click the Like Button!

To post your local ALS fundraising event on our Facebook page, contact us. Please include the date, location, contact information and details of the event. And a website link if you have one.

May is ALS Awareness Month
The ALS Association now sponsors the Walk to Defeat ALS in 45 states! Visit the Walk site, www.walktodefeatals.org to find a Walk near you. Can't find one near you? Check in on our Facebook Page - we are posting new local events across the country every week.

National ALS Registry
The CDC is making progress on the ALS Registry. They expect to start registering people later this year. Learn more about this crucial database to support medial science research to find a cause and a cure - visit the ALS page at the Center for Disease Control page here - http://wwwn.cdc.gov/als/

As always we thank you sincerely for your continuing support and dedication to raising awareness of Lou Gehrig's Disease - Amytrophic Lateral Sclerosis (ALS). We are working on our next big event - we hope to announce it within a few weeks! Stay tuned...

 

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
October 14, 2008
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.

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 15, 1930 - March 3, 1988

 

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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