THIS IS STILL A LOT TO READ and still a "work in progress" - but it's probably worth it....I went to sleep at about 5:26 in the morning making this special page on Father's Day 2015. Happy Father's Day to my dad!
Our Story (Even A Single, Individual Fund-raising "Captain" Needs Teammates, so yes - OUR STORY!)
The only reason the captain tells his story, is because it's not what most people expect.
James (thats me, the captain / person responsible for the majority of everything our team does as an individual raising money for a lot of people, with other friends spreading the word) has cerebral palsy, a neurological condition. I especially find helping people with muscular dystrophy, a progressive, fatal genetic disorder (and all obstacles, frankly) really rewarding. I also help people with cerebral palsy, cancer, a lot of things. Anyway....
NEITHER ANY FORM OF CEREBRAL PALSY OR MUSCULAR DYSTROPHY IS CONTAGIOUS! Did you know - muscular dystrophy is one term for over 40 different neuromuscular disorders. Depending on the type, your muscle gradually (or very rapidly) goes away, and mysteriously doesn't come back, and then once the muscles die off, one by one, you usually catch a cold, get pneumonia and pass away.
As for my cerebral palsy: Luckily, only my walking is affected. My speech is fine, my upper body is typical. A lot of people with cerebral palsy aren't as lucky. Still, an experimental spine surgery, a leg operation and a month being blind after old fashioned eye surgery, plus the loss of my mom to stage four terminal colon cancer as a teenager and other heartbreak isn't a fabulous start to anyone's life.
That doesn't mean it's over. Even though kids with the disease still know, time is precious.
it's not as terrifying as being told as a young person with muscular dystrophy - you may not live an average life-span of a typical human that can walk. (In fact, the kids with Duchenne, while living longer today, are told by scientists and specialists, "unfortunately, your neuromuscular condition is 100% FATAL." That's really sad. Hopefully everyone remembers A.L.S. from 2014's Ice Bucket Challenge. Also, pretty much 100% fatal within two to five years of diagnosis - with some exceptions. (Steven Hawking, Augie Nieto and Steve Gleason come to mind first.)
NOW, THE PART WHERE THE TEAMMATES SURROUND THE CAPTAIN JAMES AND WE FORM A REALLY NICE GROUP!
Our Team (including Jim and the Team Captain and Founder, James R. ) get paid: $0 by ALS-TDI / Camp Promise East. Our Team's Combined Total Raised for ALS-TDI and Camp Promise's East's programs alone since 2011: About $40,000 usually, one dollar at a time, raised and directly delivered to the laboratory and camp. (Frankly, we need to go back and count the exact number.) So, who is James, what does he do. Well, since he and other people got sick of "James did this, James did that", despite his old charity telling him to be the star instead of using the stories of the campers - he tries not to say his name 82 more times on this website. He helps everyone else first, himself second. (I'm working on that, everyone.)
In fact, so far, the only money James has ever raised for himself happened over the past two years, when he and his family needed Personal Care Assistants to watch James at home when he's not working in public. Then Jim got hit by a distracted driver a short time later. They're both still here, and they're both still smiling! :)
Prior to 2011, our team raised about $100,000 for the huge place to send kids to camp that used to have a program on Labor Day that had Jerry Lewis (James' Childhood Hero) as it's host and National Chairman. That was great. Then, almost overnight - everything changed. Our team left almost exactly Mr. Lewis did, due to that huge place shutting down one camp, moving it at least 2 hours away. By early 2012, the smaller regional offices were essentially consolidated into state-wide chapters. (To give fair credit, that second part about the offices becoming state wide instead of regional was actually a sound, good idea .) The first part about Mr. Lewis, the Former National Chairman, most Americans seem to agree, not so much. (If you want proof, its not hard to find on Google, and James has it too. In fact, some of the people who used to be served by the "old camp" go to the "new camp"!)
So instead of getting frustrated and upset, we did some homework, and went for a more "grassroots" approach, back to James' humble beginnings. As today's youth so eloquently stated in a song a few years back: "Started from the bottom, now we (are) here. Started from the bottom, now the whole team (is) here!" (At least James kept a sense of humor! :) )
1. Our Team Volunteers Time & Services!
Want proof that we're doing this voluntarily? To start, here's the camp certification our founder received. The same page also has vital tax information of both registered non-profits. Our team donates directly to their programs with as little overhead at ALS-TDI & Camp Promise as Possible.
Click here for the vital "financial info"!
Want to find out how to help by donating your TIME and TALENTS?
2. ALS-TDI'S Scientists Work In The Lab 24/7/365!
The ALS-TDI Laboratory is, "the world's first and largest nonprofit biotech focused 100 percent on ALS research. Led by people living with ALS and their families, we understand the urgent need to slow and stop (A.L.S.)"
You can learn more about the lab by WATCHING THIS (you may recognize the other wonderful young man from The Ellen Degeneres Show or his very humorous and candidly terrifying dual purpose Youtube PSA:
3. Summer Camp Happens