Support A-T and Derek’s Dreams

The Derek’s Dream Mission

Derek DiGregorio smiles easily, wrestles with his brothers, works hard to get his school work done and spends his free time pursuing his athletic championships in taekwondo. In other words, he’s very much like any other 13-year-old boy in many ways.

In one major way, though, Derek’s world is sadly different from the majority of children his age. Today, and every day, Derek faces a hideous genetic disease called Ataxia Telangiectasia, which affects three people out of every million and offers the grim prognosis of a life expectancy unlikely to reach much past 20 years.

Derek, his family, and their friends are not giving in to this opponent. Instead, they have together created Derek’s Dreams, a group dedicated to raising the awareness and resources necessary to combat Ataxia Telangiectasia.

The group’s goal is twofold. First, there are the needs of Derek himself, which will only increase during the next few years and which will make normal day-to-day life difficult. Second, there is the more global desire to attack the disease itself, so that future children and families can have a better chance against Ataxia Telangiectasia. This will involve working with government agencies and private organizations to fund greater research and
support efforts.

Derek’s dream is to live as long and happy a life as possible, surrounded by friends and family, able to pursue his education, goals and hobbies.  Derek’s Dreams is committed to making it happen.

Please help by supporting Derek’s Dream

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Kevin Durant with Derek and the Wristband

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Jason Garrett, Head Coach of the Dallas Cowboys, with the wristband for Derek.

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http://goprincetontigers.blogspot.com/2011/04/dream-on.html

Thursday, April 7, 2011

Dream On

As professional athletes go, Phil Simms might very well be TigerBlog’s all-time favorite. At the very least, he shares top honors with Julius Erving and David Justice.

Until last night, TB had never met Phil Simms. So, when TB and Simms stood making small talk at Nanina’s On the Park in Belleville last night, the natural inclination might have been to say something about the Super Bowl win over the Broncos or about how great an announcer TB thinks Simms is.

Instead, TB figures that Simms has heard about the Broncos game a million times, so he simply shook his hand and said it was a pleasure to meet him. As TB’s place of employment was mentioned to Simms by the person who introduced him, TB also said that if Simms ever needed anything from Princeton, he should feel free to ask.

In the three minutes or so that TB stood with Simms, several others came up to him to say hello and shake his hand. Simms, who probably goes through this a few times a week, couldn’t have been nicer about the whole thing, and his TV persona of being a down-to-Earth good guy seems to be an extension of who he really is.

TB did get his picture taken with Simms, as well as the person who was the evening’s host, Steve DiGregorio.

A few minutes earlier, DiGregorio – the former Princeton assistant football coach and now head coach at Nutley High known Digger to all who know him, a number that is apparently quite high, given last night’s turnout – had been at the podium, speaking to the large crowd, speaking directly from his big heart.

It was typical Digger, a mix of understated humor and familial warmth, and the result was that it became impossible to sit there during his 3 minute talk and not be moved to the point that TigerBlog reached, where he simply shook his head and wondered where people like Digger and the others who were featured come from.

The occasion was the second “Derek’s Dreams” event, and really, the adjectives don’t exist to properly describe it.

The title character in this drama is 13-year-old Derek DiGregorio, the middle son of Digger and his wife Nadia, the one who was thought to have cerebral palsey when he was younger but ultimately was diagnosed with a much worse disease, ataxia telangiectasia, one that attacks the entire body and ultimately causes the immune system to fail. The mortality rate is 100%, and life expectancy past 20 is rare; there are approximately 600 cases total in the United States.

When the A-T diagnosis was made, the DiGregorios, along with former Princeton basketball player Howard Levy, Princeton associate head football coach Steve Verbit, Academic-Athletic Fellow Jess Deutsch and several others, decided to fight back against the disease with everything they had.

This meant raising money, and it led last year to the first event at Nanina’s, which included a silent auction of some great sports memorabilia, a $100/plate dinner and then ultimately another auction for the really big sports packages.

That event was so successful that it has now become an annual thing.

Last night was sort of like a wedding, only better than any wedding TB has ever attended. It had a touch of Reunions to it, with Princeton alums all over the room. It was funny. It was serious. It was spiritual. It was heart-warming and heart-breaking, all at the same time.

Mostly it was just a celebration, of ordinary people who, by circumstance, are doing extraordinary, almost super-human things. And, maybe if forced into the same circumstances, everyone would react the same way, though TB’s hunch is, no, they wouldn’t.

TB spent most of the night mesmerized by what was unfolding before him. And by these people:

* Chris Thomforde, the former Princeton basketball great and now the president of Moravian College. Thomforde, who appeared on the cover of Sports Illustrated with current Director of Athletics Gary Walters when they were teammates here in the 1960s, who gave a five-minute invocation that was the single best commentary on faith and spirituality that TB has ever heard. “We pray,” Thomforde said,”not because we want to or need to or because we believe. We pray because we have to.” He was funny – saying after he hugged Levy in an embrace of two near-seven-footers that “Howard is the only person I can hug face-to-face” – and he was spot on when he reminded the audience that it was gathered there because of “life, and because of death.” When Digger got the mic back, he said “In all the time I’ve known you, that’s the first time I’ve heard you pray. All I’ve ever heard is ‘Reverend Thomforde, Reverend Thomforde.’I never heard you pray.”

* The two kids from Nutley High who went for a walk to raise money for Derek’s Dreams and another Nutley-based charity, Gail’s Angels. Their walk? It began in San Diego and ended back in Nutley, a scene that was captured on video and shown last night.

* Nutley High Athletic Director Joe Piro, who served as the auctioneer for the four big packages at the end – luxury box for a Giants-Dolphins game next year, a trip to a Tampa Bay Buccaneers game (arranged by former Princeton wide receiver and current Bucs coach Joe Baker), a trip to a PGA tour event and dinner and tickets to Saturday Night Live. Perhaps a fifth package, simply to see Piro talk to an audience again, should have been added. Piro managed to raise nearly $10,000 – or about one dollar for every mile per hour he was talking – for those four by themselves, all while making the entire laugh with every word that came out of his mouth.

* Jordan Culbreath. The Princeton running back’s own life-threatening illness, his called aplastic anemia, and his return from the illness to play college football again, was featured on a video that TB hadn’t seen before. When it was over, Culbreath received a long, sustained standing ovation from the crowd.

And what a crowd it was, with a dynamic that Piro called “Nutley against Princeton.”

Among those in attendance were head football coach Bob Surace, former equipment manager Hank Towns, former Princeton quarterback Brock Harvey (who led the Tigers to the 1995 Ivy title and who flew up from Atlanta just for the event), former basketball player Jimmy Lane, former basketball manager Mike McDonnell, an army of kids from Nutley football and Princeton High, much of the staff from Nutley High School.

Had TB gone after one of the items from the silent auction, it would have been the Giants helmet autographed by Tom Coughlin, but he couldn’t go beyond the $200 already bid. There were helmets from around the Ivy League, the NFL, the BCS.

It was a night of great fun and great food and great laughs, of people who were truly inspirational, of old friends, of in many ways all that is great about sports and society.

And, as Thomforde pointed out, it was all tempered by the reason it was happening in the first place.

At one point, TB was looking through the program, which included several pictures of people wearing “Derek’s Dreams” wristbands. Then he looked up and realized that there were only two people sitting at the table at that moment, TigerBlog and Derek.

Both were eating dinner, not saying anything. Derek sat there with his “Derek’s Dreams” hat, with an open-collar buttoned down shirt. Sitting there, he looked like his two brothers, the older one, Zach, and the younger one, Aaron.

Ultimately, Derek went for another forkful of his pasta, and only then did it become apparent that this seemingly mundane, completely-taken-for-granted task was a struggle for him. In that instant, it all came rushing back to TB.

This wasn’t a night about having fun. It was a night about this 13-year-old, his family, and what they go through every day, all with a horrific reality that hovers over them non-stop.

At the same time, TB couldn’t help but think that, in many ways, Derek DiGregorio is also a lucky kid. Everywhere he looked, he was surrounded by what the night was really, ultimately about.

He was surrounded by love, love that poured across everything that was going on, love for him and his family and what they are doing to fight that horrific reality.

“Having fun?” TB asked Derek.

Derek didn’t speak. He just smiled.

Then he struggled again to put food on fork, fork to mouth.

Dream on, Derek – and those who are fighting so hard to help him.

Dream until your dream comes true.

Thank you message from Steve “Digger” DiGregorio and Nadia DiGregorio:

 

 

 

Steve and Nadia

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Even if you missed the dinner, donations are still being gratefully accepted:

or send a check to the following address

DiGregorio/Dereks Dreams

PO Box 245

Kingston , NJ 08528 -9442

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The Wristband at the Taj Mahal

Princeton Police Salute Derek with the wristband

 

Doug Bryant and the University of Michigan Lacrosse Team with the wristband

Bob Costas wearing his Dereks Dreams Wristband

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***NEW  VIDEOS****

A Trip to the Giants – last June Derek was invited by the Giants for their last OTA of the Spring.  It was a great day for our family.

Dereks Dreams – Highlights from our first fundraiser – A 7 minute movie about the Derek’s Dreams mission.

Coast to Coast For a Cure – Anthony Greco and Rob Bonora walked across the country to raise money for Derek’s Dreams and Gail’s Angels, a group dedicated to helping special needs children of mothers with breast cancer.  Anthony played football at Nutley High School for Coach DiGregorio and Rob was his students at Nutley High School.

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Read about Dereks Dreams Nanina’s 2010 Dinner here:

http://www.towntopics.com/apr2810/sports5.php

http://goprincetontigers.blogspot.com/2010/04/dream-for-derek.html

http://www.centraljersey.com/articles/2010/04/27/the_princeton_packet/sports/doc4bd5e9c1bca62380057369.txt

http://www.trentonian.com/articles/2010/04/20/sports/doc4bce22e860d76254149826.txt

http://www.nj.com/sports/times/index.ssf?/base/sports-6/1271656005141530.xml&coll=5

Here’s a link to some great photos from the April 21 gathering at Nanina’s, courtesy of Chris Helm:

http://chrishelm.zenfolio.com/p60974673

and some other great shots chronicaling the memorable evening:

http://s902.photobucket.com/albums/ac221/sdigregorio/?start=all

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Sincerely,

Ernie Barsamian (ebarsamian@aol.com)

Howard Levy (howardl@hypnyc.com)

Steve Verbit (Verbit@princeton.edu)

Michele DeMatteo ( mdematteo@nutleyschools.org )

Jess Deutsch  – (jdeutsch@princeton.edu)

Gary Adler -( gadler@freshconcepts.net )

Never, doubt that a small group of thoughtful, committed friends can change the world; indeed its the only thing that ever has.  ( Margaret Mead)