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Live It Up is proud to be affiliated with numerous non-profits. We strongly believe in giving back and each week we will profile a different organization that is doing something truly amazing.

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Fighting to Give… The Jimmy Culveyhouse Story

I just completed a book about a Notre Dame classmate of mine who just died after a courageous battle against ALS. His name is Jimmy Culveyhouse and he just passed away Sunday, May 17th. His story reads like a combination of Rudy, Forest Gump, Tuesdays With Morrie and Caddie For Life. Rejected three times to get into ND after earning nine letters in high school in Gary Indiana, he finally realized his dream and got in on a probationary basis. Only 5'6", he walked onto the golf team, earned four letters at ND and set the course record at 64... which still stands! His life got more amazing from there

I learned of Jimmy's illness in February, 2008. I lost my wife Marian to cancer 5 years ago... and both of my brothers to Huntington's Disease within six months of Marian's passing. Huntington's is a neuromuscular sibling of ALS and is also fatal. Marian and I were married 27 years and we have five children.

When I learned of Jimmy's illness, I went to his web-site... www.jimculveyhouse.com and made a donation... but also sent Jimmy some motivational things I had written. Although not a writer, he asked me to write his life story.

Jimmy lived an amazing life and after learning he was diagnosed with ALS, he dedicated the rest of his life to raising money to find a cure... ALS is incurable... and fatal. My friend Jimmy was on a ventilator but was still fighting to raise money for research right up to the day he died on a Sunday afternoon when we were exchanging e-mails. They thought he had only 6 months to a year to live... but he passed his 2 year anniversary.

Jimmy made a vow he would raise $1 million for ALS before he died... he raised $400,000 before he passed away. I am trying to help him raise the rest. He did not make his goal before he passed away... but I self-published the book two weeks before he died so he had a chance to read his story and see that it was making a difference as many who read it have made donations to his web-site. We are now over $500,000... I just donated $100,000 of my personal money to support the first 10 room hospice for ALS patients at the Leonard Florence Center in Chelsea Mass... it will be the first of heopfully 10 around the country... you can learn more about it a www.als.ma.org

I wrote the book to honor Jimmy, Marian, my two brothers and others I have known who died too young. I am sure you have lost love ones to tragic diseases as well. I also write in the book about Notre Dame all Americans Pete Demmerle and Pete Duranko. Pete Demmerle died of ALS in 2007. Pete Duranko is still fighting. I also honor my good friend Gary "Knute" Knutson who died in 2005.

100% of the proceeds will go to ALS and cancer research. This is my attempt to give something back to those who will not live to enjoy their golden years as hopefully all of us will... and also to pay homage to Notre Dame and the love Jimmy has for ND... and I do too.

I self-published... and the book is now up on Amazon.com... If you go to Amazon... go to books… new releases... also.... The book is called

"Fighting to Give... The Jimmy Culveyhouse Story"- Author... Christopher Stevens- the cost is $15.95

The link is http://www.amazon.com/Fighting-Give-Jimmy-Culveyhouse-Story/dp/1439230757/ref=sr_11_1?ie=UTF8&qid=1241031377&sr=11-1

May was ALS Awareness month. If you want to make a donation... or learn more about my friend... you can go to www.jimculveyhouse.com. This summer was the 70th anniversary of Lou Gehrig’s speech at Yankee Stadium and Major League Baseball honored The Ironman’s legacy by reenacting Lou’s speech in each home team stadium on July 4th.

I took this on as a labor of love... if you ever need anyone to speak about ALS I would be happy to do so. I thank you on behalf of Jimmy and all those fighting to give. After raising $1 million for ALS, the proceeds will be split between ALS and Cancer research.

Jimmy was a very good man who gave so much to others Any help you could give would be great to sharing this with your extensive network would be great

His philosophy was "whatever you give you get back twice in return". I hope you enjoy the book

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Vicki Schneps and Peter Smergut - Life's WORC
Tender Loving Care
Sustainable Long Island
World Hunger Year
The Long Island Way

Fair Media Council
Medical Missions for Children
Honeysuckle Foundation

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