James Has A Dream For Kids

WE WON! (FINALLY!!!!!)

2011-09-20T13:37:00.000-04:00

I know I haven't updated this blog in quite some time....plenty of things going on in my life since my last post. The important thing is, finally, after 4 tries at Pepsi's money, we won a $10,000 grant on September 1, 2011 to provide scholarships for the kids I see at camp so they can attend it next year.

TO EVERYONE WHO MADE MY DREAM COME TRUE - THANK YOU!

Here's a video to show my appreciation - PERSISTENCE PAYS OFF, FRIENDS! :)

http://www.youtube.com/watch?v=hgAiXuN2t_Q

James Ends in Pepsi Refresh (For Now) - THANK YOU!!!

2010-09-09T15:59:00.001-04:00

I'm taking a break for now - I'll keep voting for those who have supported me - PLEASE WATCH. THANK YOU SO MUCH!!!!

Fifth Times A Charm!

2010-09-01T10:30:00.002-04:00

WELCOME TO SEPTEMBER, FOLKS!

First congratulations are in order for a whole slew of ideas I supported! (I mixed it up as the month went along - the more people helping, the better!

Cure JM - http://www.refresheverything.com/makejmamemory
Project Goodness - http://www.refresheverything.com/projectgoodness
San Anto Cultural Arts - http://www.refresheverything.com/sanantoculturalarts
Love, Chloe Foundation - http://www.refresheverything.com/theresamonkeyinmychair
Angels4Epilepsy: http://www.refresheverything.com/fund7yearoldsangels4epilepsyproject
National PKU Alliance: http://www.refresheverything.com/npkuafindacure

Friends still trying to win the money include:

Ed Fest - http://www.refresheverything.com/edfest2010
Buss Fitness - http://www.refresheverything.com/nordoniawellness
Abundant Rain - http://www.refresheverything.com/abundantrain
International Rett's Foundation - http://www.refresheverything.com/rettresearchtoreality

I invite you to support them all - I will be using my family's 40 total votes to vote for who I feel deserves the money

I am also sad to report that my friends at The Jett Foundation decided to stop after months of hard work. I wish Jett and the McSherry family the best - Jett has Duchenne MD, and I voted for them until their chance ended last night.

YOU decide who to vote for (besides me) - it's YOUR choice. These are merely suggestions from me, based on support I've gotten back from them.

Oh, by the way - you do know what's on this weekend, don't you? :) We'll be presenting a check on the New York MDA Telethon for over $15,000!

The 2010 MDA Telethon is Coming!

2010-08-21T16:52:00.000-04:00

Back for month four of Refresh!

2010-08-01T19:05:00.003-04:00

Hello, blogger-readers! (Bloggers? Readerers? Blogeaders?)

Tomorrow, Monday August 2nd, MDA will ask me how much the check I present at the telethon on September 5th will be for. If you have a single dollar to spare, please go here - http://www.mdactkids.org/donate

Well, we came really, really close to winning the money this weekend. The "crummy news" is that we're doing this all over again, at least for August.

The good news is, this is our best month to win yet.

First congratulations are in order for two ideas I supported - Sophia's Cure, headed by Vincent Gaynor, whose infant daughter has spinal muscular atrophy, a form of muscular dystrophy. http://www.refresheverything.com/sophiascure The $250,000 they won in July will go towards SMA research. They fought long and hard to win, and on top of that, the Gaynor family is expecting a baby boy sometime this week. I pray he is healthy!

Second, the Northview Marching Band won $25,000 to keep not only their marching band going at their high school, but to do more concerts to help the underprivileged in their community. http://www.refresheverything.com/keepthekidsonstage

Now, this past month also brought me many new (and old friends) who are at it again trying to win the money.

I invite you to support them all - I will be using my family's 40 total votes to vote for who I feel deserves the money - 5 causes (including mine) will each be getting 20 of the 40 votes daily - they are:

Muscular Dystrophy Camp (me - duh!)
The Jett Foundation - http://www.refresheverything.com/dmd
International Rett's Foundation - http://www.refresheverything.com/rettresearchtoreality
Ed Fest - http://www.refresheverything.com/edfest2010
Cure JM - http://www.refresheverything.com/makejmamemory

I will also try as best I can to continue to support others who have asked, including:

Project Goodness - http://www.refresheverything.com/projectgoodness
Abundant Rain - http://www.refresheverything.com/abundantrain
San Anto Cultural Arts - http://www.refresheverything.com/sanantoculturalarts
Pacific Northwest for Kids - http://www.refresheverything.com/pacificnorthwestadventuresforkids
Cancer Music Tour - http://www.refresheverything.com/musicfightscancer
Buss Fitness - http://www.refresheverything.com/nordoniawellness

I am also sad to report that my friends at Synergy Center did not survive July's voting. I hope they'll be back. I voted for them until their chance ended last night.

YOU decide who to vote for (besides me) - it's YOUR choice. These are merely suggestions from me, based on support I've gotten back from them.

Something on my mind

2010-07-22T13:00:00.003-04:00

I have watched the Jerry Lewis Telethon since I was 4. I am now 23. That's an awful lot of timpani rolls, musical acts, magicians....and Jerry Lewis.

There's something that bothers me though....some people who are disabled like me just continue to hate Jerry.

Why?

People against what he does every Labor Day say so because he is "patronizing" them and "not giving a clear and accurate depiction of life with a disability". There are protest groups against this man, and his show. Why, in God's name would you protest a man who has spent SIXTY YEARS of his life trying to make children healthier? Some critics have said, "he parades the kids out like helpless victims". I've watched many, many telethons. What Dennis James and Jane Pickens did in the 50's, when they had kids with cerebral palsy come out on stage and sing "Look at us, we're walking; look at us, we're talking - we who've never walked or talked before" - that's patronizing to me. That's pitiable to me. That was also the 1950's, prior to the Americans With Disabilities Act (ADA) and prior to any social change in this country about the disabled.

I mean, here''s the perfect "case in point" - Bob Sampson, often referred to as "Jerry's Big Kid", because he survived the depression and was turned down a college scholarship because the university he went to said he wouldn't live long enough. Well, Bob ignored that and went on to become Vice President of United Airlines. He then became a disabled activist, calling for changes that led to the ADA. He came on the telethon for (basically) 30 years. He knew he was lucky. He knew he probably wouldn't benefit from the research "fallout" we're starting to see now. But he got up on that stage and spoke from his heart about his frustrations, his joys, his family, his faith, and the fact that for many of the children suffering from the more aggressive forms of muscular dystrophy that they needed help from the American public to advance research money.

Now, Bob would come on the stage in his motorized wheelchair. If you're in the television business; if you're the cameraman - how do you not show at least part of Bob's wheelchair - it's nearly impossible. How do you "show" muscular dystrophy to the average American when it's a genetic disease? You can't show them - oh look, here on this x ray of the body is muscular dystrophy - MD is not like a cancer cell. It's invisible as it spreads to each muscle and weakens it. The only way that you can "show" muscular dystrophy is by putting together 5 minute video profiles on that telethon that show the progression of the disease from year to year. To those who think it's maudlin in nature to show a 10 year old losing his muscle strength, and getting his or her honesty about living with this, even if they're frustrated - put yourself in their shoes - literally. Put yourself in the shoes of the parents who take care of them. They don't know how long they'll have each other, because this disease KILLS. I'll repeat that. THIS DISEASE KILLS.

Has Jerry Lewis said some absolutely dumb stuff about disabled people? SURE HE HAS! But he's also apologized for those remarks. 20 years later, some (not all, some) disabled people still hold a grudge against him for what he said. In 1990, right after the passage of the ADA, he said that living with muscular dystrophy makes (you) "half a person". That a wheelchair is a "steel imprisonment". THAT WAS DUMB FOR HIM TO SAY. No argument there.

I am NOT "half a person" in the sense that my wheelchair limits me - I am not in a "steel imprisonment". HOWEVER....I am not whole in the sense that I have physical limitations the majority of the world doesn't. If he judges me (and others like me) by saying we aren't "whole" because we can't walk, then he is correct. If he judges me (and others like me) by saying we aren't "whole" because we're not proud, intellectual, capable human beings with emotions, then HE IS WRONG. Jerry KNOWS this. In my opinion, I think he meant that we are only "half" because we can't walk. Maybe I'm interpreting his words incorrectly. (If I am, Mr. Lewis - or anyone else for that matter - please let me know.)

Other telethons have tried to be very positive. They've talked about accessible living, rights for the disabled, etc. But there's one thing everyone, for OR against Jerry, forgets. These other telethons dealt with diseases and conditions that had some sort of treatment or cure available. There is currently NO TREATMENT OR CURE for any form of muscular dystrophy. My friend Cody's mother always says to me, "James, I'm just praying for a miracle - I'm praying for a cure."

Therefore, if Jerry were to say, "OK, let's completely scrap what's been successful at raising money since 1966; let's overhaul the show and pretend that it's not frustrating to have muscular dystrophy, that it's not frustrating to lose a child from it - that there's no urgency for a treatment of any kind", not only would the public get confused and completely turn on all the GOOD he's done, they'd be given an even MORE inaccurate depiction of muscular dystrophy!

I've only seen Jerry talk to one kid a year, two tops, in the last 15 years. Are you really going to ask a little girl like Abbey Umali on worldwide television what it feels like to be wasting away from this disease? NO! That's cruel! That's wrong! It would make her cry! Which is why Jerry has never ASKED those types of questions to the kids he's talked to.

This year, MDA IS changing the show's format - and guess what they're doing? They're bringing back former goodwill ambassadors - the very children, now fully grown, that the anti-Jerry folks say Jerry "exploits". I highly doubt they'll be reading off cue cards. They'll probably be the most intelligent, well-spoken people on the show!

I said on Youtube that the activists against Jerry should leave him alone. He doesn't give them any publicity - why should he - he's 84 going on 85 - he KNOWS what most of us do - HE'S ONLY TRYING TO HELP THESE KIDS. Now, Jerry doesn't need me to defend him, but year after year, when those against him rally against the telethon and its purpose, I get angry. He's not going to change the way he feels. If you don't like the way he feels about children who are sick, you can change the channel. Most people don't - because they see that even though he's notorious as an actor and director for his ego, he CARES about children.

Every year, the same question get asked, by me, by families of kids I know with this disease who are frustrated, by those who don't agree with Jerry - where are the cures?

Guess what.

Jerry Lewis has cured me.

He has cured me of hatred towards any other person, regardless of anything. And for that, I am proud to be one of "Jerry's Kids".

Comments, feedback, and respectful disagreement is welcome. I'm ready to address anyone who doesn't like what this man does very, very politely.

James in the press (yet again)!

2010-07-08T14:02:00.003-04:00

Courtesy The Stamford Times:

Stamfordite seeks Pepsi grant to help kids go to summer camp

http://thestamfordtimes.com/story/488634

HAPPY BIRTHDAY, CODY!!!!!!!!!!!!!!!!!!!!!!

2010-07-07T17:31:00.002-04:00

My pal Cody in New York is FINALLY 10 TODAY! I KNEW he celebrated a birthday this month, I just didn't know what day - his mom called to remind me - just left him a message!

HAPPY BIRTHDAY, MY SUPERHERO!!!!! (MUAH!!!!) I LOVE YOU!!!!

The kid is 10 today. And guess what - the doctors were WRONG! He's not in the wheelchair full time yet, like they predicted! YAAAAAAYYYYYYYYYYYYYY!!!!!!!!!!!

Donate: I'm challenging people to give $10 in honor of my pal's 10th birthday. Let's see how many of you can do that!
http://www.mdactkids.org/donate

Cody blowing out candles at my birthday party in March, 2010 with his mom, Marcia

(which turned into an early birthday for him!)

The Beat Goes On - Month #3 (Third Time's A Charm)

2010-07-01T03:04:00.000-04:00

We're at it again later this morning for another month. Now I'm going to be nice. I know you voted your hearts out. However, this is key. If you don't e-mail, facebook, tweet the link (and by the way, if you follow someone famous and use Twitter, tag @MDACTKids in your tweet!), we stay "stuck" again.

So, what are we going to do this month, starting later today? All together, now.....

WE'RE GONNA VOTE! WE'RE GONNA SHARE! WE'RE GONNA WIN IN JULY!!!!

Stay tuned!

YES WE CAN!!!!

2010-06-30T12:23:00.001-04:00

So, it's the last day to vote for June.

Worst case scenario: We'll continue next month, and we'll continue UNTIL WE WIN!!!!

However....I'll never quit. I'll never give up.

Can we pull of a miracle and send these kids to camp?

YES! WE! CAN!!!!! WATCH - VOTE - SHARE - WIN IT FOR THEM!!!!!

http://bit.ly/ywcmda

Remembering Mattie Stepanek: Poet, Philosopher, Peacemaker

2010-06-22T01:40:00.002-04:00

Today (June 22, 2010) marks the 6th anniversary of the passing of MDA's dear friend, Mattie Stepanek. If you don't know the name, chances are you remember the face and the voice. We CELEBRATE his legacy and life, and his philosophy to "play after every storm".

For those on Facebook: An event I created to remember Mattie. http://bit.ly/MattieMoment2010

Please watch my special two-part "celebration" of Mattie's life below.

(Click on the red box at the end of the video to see Part 2)

Part 1: http://bit.ly/Mattie2010P1
Part 2: http://bit.ly/Mattie2010P2

Fathers & Sons - 11 Days to go!!!

2010-06-19T14:44:00.002-04:00

I want to thank my dad on this Father's Day Weekend. He is my best friend, my pal, and my rock. In the absence of my mom since her passing, he has done a tremendous job raising me and my younger sister.

I love you dad.

For all the fathers or men who might someday be that read this, happy Father's Day to you. I can't help but think, however, of fathers lost to muscular dystrophy, as well as sons who have passed away.

A parent's proudest accomplishment is seeing their child grow up to be a healthy, loving, caring member of society. A disease like muscular dystrophy only complicates the "healthy" aspect of things. Boys (and girls) with muscular dystrophy or any other chronic or terminal illness possess the same love for their parents, they face numerous challenges with as few complaints as possible, and they try to live their lives with dignity and independence while learning to adapt to their limitations.

To me, for a father whose son or daughter who has this disease, I can only observe what I know from watching my dad and dads I know with muscular dystrophy and other disabilities. It is heart-wrenching at times to see my dad frustrated that his child cannot do all the things he wants to that easily. I know that fathers with special needs children often get frustrated and ask themselves, often in private introspection, "What if?" or "If only..." or "I wish that..." However, that question quickly changes to, "I'm blessed" or "I'm lucky" or "Why not?" and, most crucially, "I'm proud".

It takes a special breed of person to care for special needs children. It takes an even more special strength to deal with their trials and tribulations, sometimes including the final and most painful - an early death.

To the fathers and sons reading this, and especially to the fathers and sons who fight the uphill battle of chronic or terminal illness like muscular dystrophy together, I pray to God that we win the money in 11 days for ALL children - including you.

Happy Father's Day.

Love,
James

Make a contribution in honor of your father or son: http://www.mdactkids.org/donate

With everything going on - just stop for a second - think.

2010-06-17T08:17:00.001-04:00

James' thought of the day, maybe his thought for every day, but he feels like reminding you.

Every second of life is a gift. Don't take it for granted like a
Christmas present you rush to tear open on December 25th. Some can't
"tear" through the "present" like you at all. ♥

And one more:

Don't hate anyone based on anything. "Hate" is too strong a word. Only say you don't agree with them when those people decide to "hate" you for being you and standing up for what you believe in.

God bless you all - take care of each other - thank you.

JL

2 WEEKS TO GO!!!!!!!

2010-06-16T03:33:00.000-04:00

I'm ready to win! You voted, so you are too! Let's finish the job! VOTE AND PROMOTE ME! Thanks, gang!

Mayor of Stamford, CT proclaims day in James' honor!

2010-06-07T20:25:00.000-04:00

Watch James read the proclamation here!

Nothing Comes From Nothing: Spreading The Good Around

2010-06-03T10:28:00.002-04:00

In 1993, Jerry Lewis and Maureen McGovern sang a duet on the MDA telethon - if my memory of watching the clip on my PC serves me right, the chorus went like this:

Nothing comes from nothing, and nothing ever could...
So when you feel that glow inside you,
You must have done something good!

Here's who I'm supporting in June: (Some started out in May, or even earlier):

Sophia's Cure Foundation
Ed Fest
Synergy Corporation
Johns Hopkins Ataxia Ambassadors
Project Goodness
Project SKIP
Top Banana Education Foundation
Project P.A.N.D.A.S. for Kids in Crisis
The Jett Foundation
Free To Be

And here's who I supported in May who won!

STOP SMA
Ride 192

(Finally got around to putting up the idea links! If you're a supporter of mine, consider leaving them a comment thanking them for helping out, and of course, leave a vote, too.)

LETS MOVE! 10 DAYS TO GO!!!!!!!!

2010-05-21T22:54:00.000-04:00

To those of you reading this - I still have some "big guns" that some special people in my "army" are getting ready to fire after the weekend - but I NEED YOU!!!!! YOU'RE MY TROOPS!!!!!!

Currently "stuck" in 187th place - but NEVER GIVING UP!

Love,
James

My Friends: We Have Not Yet Begun to Fight!

2010-05-19T01:32:00.002-04:00

For those of you who have been voting for my idea to send the kids in my area to muscular dystrophy camp - I thank you. However, you may not be aware of something: I need you to continue to vote every day until we WIN. The link to vote may change, and we may take some time "off" depending on what all of you do in the next two weeks. If we get to the top 100, I don't have to go through waiting a month or more to do this again. At that point, I'll ask you to keep on voting again.

But let's get in the top 100 first. We have two weeks to do it. I need you to bug some friends, tweet, and post - everything you've been doing. Why? Because these kids deserve it. I've been through so much pain in my life - trust me; nothing compares to the pain of losing your child, brother, sister, parent or friend to this crappy group of diseases known as muscular dystrophy.

So when you cast your vote - yes, some people out there may doubt us - yes, some people out there may think my story is of local interest only - when you cast your vote, you're proving them wrong. Prove them wrong, prove the kids right.

Please vote. Thank you!

Love,
James

Movin' On Up!

2010-05-15T20:05:00.002-04:00

Well, we were at 189 last night, but thanks to some friends. we've moved in a positive direction by a few slots.....Still over two weeks to go - Hope Springs Enternal!!!

Breaking News: Huge milestone reached for fund, celebration is coming

2010-05-12T13:45:00.001-04:00

BREAKING NEWS: WE HAVE NOW SENT OUR 100TH CHILD TO CAMP SINCE 2005! THE NEXT CHILD THAT GOES WILL BREAK LAST YEAR'S RECORD! MORE INFO TO COME - DONATE NOW!!!

New YouTube Channel (AKA What I've Learned From This Experience)

2010-05-11T17:56:00.000-04:00

5:50 PM, Tuesday, May 11, 2010:

We have a new YouTube channel for the fund.

Here is the link:
http://www.youtube.com/user/mdactkids (I'll also post that on the side bar.)

When I submitted my application for Pepsi Refresh, I wasn't sure whether I could add my website or even Youtube videos as links, because Pepsi doesn't accept anything with logos or organization names on it. So, not wanted to get rejected, I just made this blog. Well, I've seen other people list thier websites and put short Youtube videos in thier applications, so if I have to do this all over from scratch, I'll add that to my idea proposal and pray I get accepted again.

Thanks for hanging in there and voting. Please continue to spread the word!

Love,
James

UPDATE: 7:10 PM, New York Time - Saturday, May 8, 2010

2010-05-08T19:16:00.001-04:00

Well, gang, things could be much worse. Currently we're at #180 out of 400 + ideas. The problem is, we need a few "big pushes" in order to even get to the top 100. I AM NOT - REPEAT - I AM NOT - PANICKING OR GIVING UP. This just means I have to thing even more "outside the box". By Monday, we hope to have a new influx of groups of people voting. In the meantime, I need everyone reading this to vote - it's really easy to do and costs nothing but a few seconds of your time.

Thanks for hanging in with us, folks!
James

So far, so good!

2010-05-05T19:23:00.001-04:00

Well, after a day or two of being in the 200's, we jumped up to 194, and then really jumped up to #173 overall. First off - thank you all of you who voted for moving us up; I have a feeling that the people both ahead and behind of me have strategic plans as to when to "Tweet" and Facebook their supporters like I do, so we may float around the 170's to 200's for a while; I have no idea what will happen. Just keep voting and spreading the word, and we'll do good!

James

PS: I found out I was wrong - anyone in the world can vote - I have a lovely group out in Australia led by a lady named Natasha, and a friend originally from the US, currently in Italy, Melissa, then there's my pal Thea for the UK, and I bet we have a few more folks around the globe watching and voting, so thank you very much, my friends! Keep at it for me! I love all of you!

More to come!!!!

Time to go to Plan B

2010-05-04T00:09:00.000-04:00

While cramming for finals tonight, I've noticed that we've gone down in the rankings, from #221 to #224 out of 408 ideas in a matter of a few hours. So, I'll stress it again (and again, and again) - I need your vote EVERY DAY for the next 28 days. Get on the computer and contact some friends. To lose but be in the top 200 (not even the top 100) is respectable - to slip 3 spots in a matter of hours tells me I'm doing a sub par job. When finals are over Tuesday Night, I'm launching Plan B, C and D to get more people involved. In the meantime, PLEASE HELP ME.

Thanks,
James

How the Pepsi Refresh Voting works

2010-05-01T07:38:00.005-04:00

I know a lot of you who will come to this site will probably ask me, how do I vote to help you win and make your dreams for the kids come true? And how does it work - how will all of us know if you've won?

First, how to vote:

Go to http://www.refresheverything.com/mdcamp and if it asks you to sign up, create an account name and password.

Click on the "Vote for this idea!" button located on top of this blog! (as of 7:35 AM Eastern, we're in 222nd place overall - not great, but we have to start somewhere, right?)

That's it!

(Of course, you can click on the idea name to see a more detailed description of the project, but you likely already know what it is if you're on this blog.)

Second, here's what happens. If you go on the "Pepsi Refresh" site, you'll notice that grants are broken down into six categories ranging from Health to The Enviroment. You'll also notice that each category has four grant "levels", ranging from $5,000 to $250,000.

I'm in the Health Category.

You can vote every day this month, starting NOW. Each day, you get 10 votes. To make it fair, "the catch" is you can only vote for MY idea ONCE EACH DAY. Take a look around at some of the other very deserving folks trying to make the world a better place and use your remaining 9 votes any way you choose - you don't even have to use them all (but I hope you would!).

Our goal is to make it into the TOP 10 IDEAS FOR HEALTH of the by the end of May. If that happens, the camp and the kids get $50,000!!!!

Now, if we don't make the top 10, the other goal is to stay in the top 100 ideas for HEALTH. Why? Because that way, I won't have to submit my idea all over again and wait at least a month, if not longer, to do it all over again. However - if we stay in the top 100 ideas for health, and keep staying there without winning - let's face it - most of you will get tired of it. THIS IS PART OF THE REASON WHY I WANT TO KNOCK IT OUT AND WIN ON MY FIRST TRY. (The other part is I want people to donate whatever they can so just in case we lose, it's not a "total loss." Creating awareness and raising funds due to the exposure of this program is WONDERFUL!)

What can you do to ensure victory for the kids? The same thing I'm doing - E-Mail, Facebook, Tweet, MySpace some friends - tell them about this blog, my site (http://www.mdactkids.org/) and the Facebook and Twitter groups.

I'm also using the local media and elected officials to get my whole community behind me - but I need the UNITED STATES behind me, because without a nation full of people who believe in me, I can't win for these kids.

Now, how will we know if you win?

First off, check this blog everyday for the next month - go ahead, bookmark it. (I'll wait! :-) ) The other thing you can do is, when you sign up to vote, you have the option to get an e-mail notifying you when a grant you vote on - ANY grant you vote on, including mine - WINS. Finally, you can always check the Pepsi Refresh site on the first of every month to see who won what.

Hopefully, that explanation made sense. If I win, I have to worry about signing a few legal documents and giving the money to my local MDA office (of course). But that's for ME to worry about, if and when it happens.

The power is in YOUR hands to send these kids to camp and make my dream come true.

I have a perfect song for you, by a personal friend of mine, Tony Orlando. Tony and I met the first time I was invited to appear on the MDA Telethon in New York in 2008. Now, besides being seen locally, I was seen by over 40 MILLION PEOPLE in the US and millions more worldwide, when in Hour 4 of the telethon, I sang backup with Tony and disco queen Gloria Gaynor, and got to talk to my idol, Jerry Lewis.

Now I believe I can roll on to the stage this year with your help and say to Tony and Jerry that I sent an entire camp full of kids to a week of fun and dreams coming true. But I won't do it alone - you'll be my team. Listen and watch this clip from 1986 to see how "Just One Person" who believes in themselves can inspire others to get behind them.

Tony Orlando Sings "Just One Person"

BELIEVE IN THESE KIDS. BELIEVE IN YOURSELVES. LET'S DO THIS!!!!!!!!!

And so, the journey begins

2010-05-01T01:50:00.009-04:00

Well, if you're here, welcome. As you probably figured out, my "dream" now has a "spark" thanks to the Pepsi Refresh campaign. It's just after 1 AM Saturday morning, I got the e-mail that I'm in the running, and, well, here we are.

Before I do anything - I want to show you one of the reasons why I'm doing this.

That's me with Cody, whose last name I'm not giving out in respect for his family's privacy.

Cody has Duchenne Muscular Dystrophy (DMD), the most deadly childhood form of neuromuscular disease. Average suffers die in their late teens to early 20's. Cody was also born with what I have - cerebral palsy - he was later diagnosed with DMD. His 10th birthday is in July, and his doctors are saying he's probably going to get a real crappy present - a brand new wheelchair, which he must use for the rest of his life, until he gets on a ventilator - and then, only the lord knows what will happen. My goal is to stop muscular dystrophy from taking him too soon, and one of the ways I do it is by raising money to send kids like him to Muscular Dystrophy Association (MDA) Summer Camp. In less than six years, I've raised close to $75,000 and sent nearly 100 kids - including Cody to camp. It doesn't cost families a dime.

The MDA is one of the best run charities out there, and none of the services they provide cost families anything - from life-saving flu shots for a child's respiratory system, to support groups for families, to camp, and most importantly, research, MDA does as much as it possibly can to help tens of thousands of people stricken with any one of 43 neuromuscular diseases live longer, fuller, happier lives. My work with them and the example my idol, Jerry Lewis, has set for me, has provided me with a mission for my time left on this planet, however long that is.

Camp is an amazing place. I've seen it with my own eyes twice in the last three years. Last year, many kids didn't go to camp for the first time in 55 years because 11 campers at three campsites came down with the H1N1 virus. Thankfully, though no one died, MDA made the very tough, yet right decision. Because MD gradually attacks every muscle in the body over time, including the lungs and heart, they just couldn't risk the kids getting sick. I was doing a local radiothon for my camp fund when the news broke in June, 2009. We brought Dr. Valerie Cwik, a renowned MDA health care director on to talk about the camp closings, and she promised it would be back bigger and better than ever in 2010.

Well, it's almost time for camp to re-open. And the kids I've seen are brave and courageous, not just because they were cast these unfortunate circumstances, but because they're so proud of their accomplishments. Whether it's showing you how they decorate their bunks, telling you how they go swimming and play basketball, or describing a practical joke they play on their volunteer councilors and doctors, I've never seen them sad. Quite the opposite; if you go up to them, they're always smiling - and the first words out of their mouth, even to me, in my own wheelchair, always are - Hi! How are YOU? That blows me away and puts my life in perspective. Whenever I feel down about my obstacles, I think of those kids and say, "if they can face their fears with such a positive attitude, so can I."

Now the goal here is to win $50,000 so I can send 62 of the 70 kids my local camp in Spring Valley, NY can handle. I raise money throughout the year to send as many as I can - not for fame or my own ego, but because I can't stand to see them die without a fight. I've gotta make them happy. Whether we "win" the grant or not is irrelevant to a degree for me - I would be ECSTATIC if we did, believe me - but just in case we don't - this is a great opportunity to bring awareness to those with neuromuscular disease and the healing power camp can provide.

As we go along, I'm going to post updates of how we're doing, both in the Pepsi Refresh campaign, and overall. I want people to see that these children deserve not to be objects of pity, but of compassion. Pity for a fellow human being + ACTION = Compassion. I hope that regardless of what happens, you'll show your compassion by voting with your mouse, and your dollars. Because the greatest gift you can give these children is hope. And seeing them smiling in the sunshine, while playing with others facing the same challenges they do, gives them - and me - hope for a better tomorrow.

Here's the link to donate to my efforts - I don't want to just "beat" last year's total. I wanna DESTROY IT!!!! And with your help, we're gonna knock the barriers of disability DOWN!

God bless you all,

James Lacerenza

Founder, ConnectiKids Summer Camp Fund

Volunteer / Supervisor, MDA Hawthorne, NY Office

To donate: http://www.mdactkids.org securely online with a major credit card

or send checks, made payable to "MDA Summer Camp Fund" to:

MDA, C/O James, 7 Skyline Drive, 2nd Floor, Hawthorne, NY, 10532.

MDA is a registered 501c3 charity, and your donations are tax-deductible.

100% of money donated to James' fund goes to cover the $800 fee to underwrite a child's camp experience at his local MDA camp in Spring Valley, NY. No family is ever turned away; no pledge from you is too big or small.

LET'S DO IT FOR THE KIDS!!!!!!!!

Contact James by clicking on "Post A Comment" below! (He'll try to read and respond to every one!)

Please help with my dream!

2010-03-01T13:12:00.001-05:00

My name is James Lacerenza. I'm 22 and I have cerebral palsy. I help children with neuromuscular disease spend a fun filled week at a special camp live out thier dreams. The camp is sponsored by the Muscular Dystrophy Association. Over the past five years, I have raised over $60,000 to underwrite the costs associated with sending kids to this camp. I need your help to send more. Please visit here to learn more about my story or to make a secure contribution using your credit card. You can also join my Facebook group, located here to keep up with the latest developments (you'll need a Facebook account.)

Thank you, and God Bless You!

Love,
James