http://www.cbc.ca/canada/prince-edward-island/story/2008/11/24/pe-bain-irun.html

Recognition for autism run

P.E.I. runner Alex Bain has been named one of Canada's most inspirational runners by iRun magazine.

Bain's run for autism awareness is highlighted in the magazine's January issue.

The magazine outlines the 2006 run Bain undertook to raise awareness for autism. During July of that year, Bain covered 20 to 25 kilometres a day in a tip-to-tip run across the province.

Bain was diagnosed with autism when he was three.

2009 iRun Award Winner - Alex Bain

My "Happy Song"

This morning at 6:15, as I was dragging myself out of bed, I heard Karen announcing Alex's iRun Award on CBC Radio Island Morning. Then, because the current contest they are running is "send us your 'Happy Song' and we'll play some of them" they went back through their mail and found an email I sent last week and read it in part:

These are Days
10,000 Maniacs

Takes me back to Alex's tip to tip run. As I accompanied him on my bike, this is the song I obsessively played on my MP3 player. To me, it was the theme song of his run.
(He used some different songs to accompany the video and stills when he made the video of that run: North Country by the Rankins, Think About the Years by Haywire, Old Man by Neil Young, Against the Wind by Bob Seger and Day by Day by Doug and the Slugs.)

-jypsy

I just checked YouTube and, of course, there's a music video (and a live performance from President Clinton's Inaugural Ball). Here it is (and I still obsess on it):

Lyrics

These are the days
These are days you'll remember
Never before and never since, I promise
Will the whole world be warm as this
And as you feel it,
You'll know its true
That you are blessed and lucky
Its true that you
Are touched by something
That will grow and bloom in you

These are days that you'll remember
When May is rushing over you
With desire to be part of the miracles
You see in every hour
You'll know its true
That you are blessed and lucky
Its true that you are touched
By something that will grow and bloom in you

These are days
These are the days you might fill
With laughter until you break
These days you might feel
A shaft of light
Make its way across your face
And when you do
Then you'll know how it was meant to be
See the signs and know their meaning
It's true
Then you'll know how it was meant to be
Hear the signs and know theyre speaking
To you, to you...

Natalie's official website:
http://www.nataliemerchant.com/

10,000 Maniacs official website:
http://www.maniacs.com/

An exceptional accomplishment

http://www.journalpioneer.com/index.cfm?sid=164986&sc=123

LETTERS TO THE EDITOR

An exceptional accomplishment
The Journal Pioneer

Editor,
From Aug. 14 to 18 Luke McIver, a young man from Kinkora, ran across P.E.I. in support of Parkinson’s.
I first met Luke in early July when he decided to undertake the 245-kilometre run. His determination and spirit were infectious. Just having graduated high school and entering UPEI this fall, Luke could have spent the summer many other ways. Instead, he opted to make a difference as his grandfather had Parkinson’s and his grandmother now lives with Parkinson’s.
Luke’s journey was close to the equivalent of six full marathons in only four days. Luke’s parents, grandparents, friends and teammates all supported his efforts.
It was inspiring to see so many young people from Luke’s high school and soccer teams joining him along the way. Parkinson’s is now being diagnosed in people from their late 20s through early 50s, as Young Onset Parkinson’s is being better understood.
In the Maritimes more than 8,400 people live with the condition for which we still have no known cause or cure. Luke’s efforts to help create awareness and raise funds are an excellent example of how families can support one another while helping our society.
For the run a van was donated, hotel rooms, meals, Vogue Optical our SuperWalk for Parkinson’s sponsor hosted barbecues in both Summerside and Charlottetown, running shoes were provided along with water and refreshments. Businesses, community organizations and individuals made donations tallying more than $7,000 along the way.
Luke McIver’s individual commitment to Parkinson’s brought people from across Prince Edward Island together collectively for the Parkinson’s cause. Today we are hearing lots about Olympic achievements, records being broken and medals being awarded. Running 100 metres or one marathon is an accomplishment, but what this young Islander accomplished is truly exceptional.
To Luke, his parents, family and friends, and to the many Islanders who supported the run, the Parkinson Society Maritime Region thanks you for your generosity and spirit!
Paul D. McNair,
Executive Director,
Parkinson Society Maritime Region

McIver completes Parkinson's run in Tignish Sunday

http://www.journalpioneer.com/index.cfm?sid=163103&sc=118

McIver completes Parkinson's run in Tignish Sunday

Luke McIver, with his parents Debbie and Paul, enjoyed a break in Summerside Saturday afternoon, before
hitting the road to finish his Parkinson's fundraising run in Tignish Sunday. Jim Brown/Journal Pioneer

SUMMERSIDE
JIM BROWN
The Journal Pioneer

Luke McIver's grandmother greeted him with a cheque and a hug at a brief stopover Saturday in Summerside during a tip-to-tip run to raise awareness about Parkinson's disease.

The run, which started at East Point Thursday, ended in Tignish late Sunday afternoon.

Luke was delighted to receive a $500 cheque for the Parkinson Society from his grandmother, Martha Perry, but seemed happier with the hug. "I'm very proud of him," said Perry, 71.

His grandma is the reason Luke decided to lace up his sneakers for what he described as a grueling but exciting journey. She has Parkinson's, as did Luke's grandfather, Marshall Thomas, who passed away in 1991.

The Kinkora Regional High School graduate was mobbed by family, friends and well-wishers when he turned into the Vogue Optical parking lot in Summerside, accompanied by running mates, shortly after 12 noon.

"The support's been excellent.

"Thanks to everyone who sponsored, pledged or even ran with me. It's been great," said McIver.

His parents Debbie and Paul accompanied him by car. Two brothers, Chad and Adam, have also been among his biggest boosters. Adam lives in Calgary, Alta., but has been calling Luke's parents several times a day on their cell to keep track of his progress.

Parkinson's disease awareness aim of tip-to-tip run

http://www.journalpioneer.com/index.cfm?sid=160839&sc=118

Parkinson's disease awareness aim of tip-to-tip run

KINKORA
STACEY MURRAY
Transcontinental Media

Luke McIver will be running Prince Edward Island from tip to tip to raise awareness for a disease that has hit close to home.
McIver is set to make his way across the province between Thursday and Sunday for his grandparents, who have both dealt with Parkinson’s disease.
His grandfather, Marshall Thomas, passed away in 1991, while his grandmother is now trying to manage the disease after being diagnosed 12 years ago.
McIver, an active runner, wanted to find a way to help raise awareness for the disease, so he decided to put his feet to work.
“I’ve been running a lot. . . I might as well do it for a reason.”
When he told his parents about the idea, they were quick to lend their support. His grandmother is also touched by the idea, he said.
“She’s pretty proud. She’s one of my biggest supporters.”
McIver said if his grandfather were here, he’d also appreciate the effort.
“I think it would be very important for him.”
McIver will start his run in East Point on Thursday and will finish the fourth leg of his run in Tignish on Sunday.
He said sponsors have been supportive of the run and the cause it supports.
“It’s important to know everyone is behind us.”
McIver hasn’t set a goal for the run, although he does have an idea of how much he’d like to raise.
“I want to make as much as possible.”
Parkinson’s disease is a degenerative disorder that affects the central nervous system.
It often affects a person’s motor skills and speech. There is no cure.

Awareness of Parkinson's disease aim of tip-to-tip run

http://www.theguardian.pe.ca/index.cfm?sid=157541&sc=98

Awareness of Parkinson's disease aim of tip-to-tip run

Luke McIver will be running from tip to tip this August to raise awareness about Parkinson’s disease. Submitted photo

STACEY MURRAY
The Guardian

KINKORA — Luke McIver will be running Prince Edward Island from tip to tip to raise awareness for a disease that has hit close to home.
McIver is set to make his way across the province between Aug. 14-19 for his grandparents, who have both dealt with Parkinson’s disease over the years.
His grandfather passed away recently, while his grandmother is trying to manage the disease.
McIver, an active runner, wanted to find a way to help raise awareness for the disease, so he decided to put his feet to work.
“I’ve been running a lot . . . I might as well do it for a reason.”
When he told his parents about the idea, they were quick to lend their support. His grandmother is also touched by the idea, he said.
“She’s pretty proud. She’s one of my biggest supporters.”
McIver said if his grandfather were here, he’d also appreciate the effort.
“I think it would be very important for him.”
McIver will start his run in North Cape, travelling to Richmond on his first day. From there, he’ll go to Hunter River on the second day, and to Mount Stewart on the third day.
The fourth leg of his run will end at East Point.
He said sponsors have been supportive of the run and the cause it supports.
“It’s important to know everyone is behind us.”
McIver hasn’t set a goal for the run, although he does have an idea of how much he’d like to raise.
“I want to make as much as possible.”
Parkinson’s disease is a degenerative disorder that affects the central nervous system. It often affects a person’s motor skills and speech. There is no cure.

Running FOR Autism, not AGAINST it. Why we don't support Run The Dream

So, there's this guy..... who wants to run across Canada... (Okay, as the mother of a guy who wanted to run across his Province, I can relate...) So, he goes looking for a "cause" to raise awareness about and funds for, while he runs. His research brings him to Autism (or, more precisely, ASD - "Autism Spectrum Disorders"). Again, I can relate. Our Autism Celebration Run was about fulfilling Alex's dream to run across Prince Edward Island, to raise awareness about Autism (ASD) and to raise funds to benefit our Island's autistics .

The similarities between Alex's "Autistic Celebration Run" and Jonathon Howard's "Run The Dream" Run appear to end there. Alex ran FOR Autism, Mr. Howard is running AGAINST Autism.

Mr. Howard, while admitting his life is untouched by autism, is out to inform "Canadians who have been spared the burden of dealing with Autism" that autistics are a "burden for the rest of their lives" to our parents, family members, teachers and social support groups. He wants to "promote a unified and effective approach in Canada to dealing with Autism, and ultimately preventing it or finding a cure."

It appears obvious from those sentiments that when he decided to pick autism as his cause he decided not to talk to autistics about it. In fact, my email to him, CC'd to every one of his Team members, has gone unanswered. Meanwhile, two different Provincial Autism Societies have cooperated to get a message to Alex asking if he's like to join Mr. Howard on his run when he's on PEI.

"Why would Alex support anyone who considers him to be a "burden" and have a wish to prevent people like him, his brother and his mother from existing?" I asked. Again, no reply.

Despite its claim that "We promote public understanding and acceptance of people with Autism", my Provincial Autism Society is supporting Mr. Howard and is planning a "Meet & Greet" for him. Yes, the PEI Autism Society donated $500. to The Autistic Celebration Run. We've thanked them before and I thank them again. As well as directly benefiting from Dennis Debbaudt's Autism Safety Training Seminar , the parents who make up the PEI Autism Society can take comfort in the fact that PEI's Law Enforcement Agencies, First Responders, Medical & School personnel and Early Childhood Educators were also trained in Autism Safety, Recognition & Response . This education remains ongoing in Police Departments, at the Police Academy, The Firefighter Training Academy and Holland College Paramedic courses etc, etc. The only meeting & greeting that happened with PEI Autism Society Executive was not during Alex's 14 day run, despite numerous invitations, but occurred, informally, when members of the Executive Board and others attended the free Autism Safety Training Seminar we presented with Dennis Debbaudt. We did meet a couple of people from the autism community who had read about us during the Run but contrast that to the outstanding support we got, monetarily & morally, from the Running community.

As well as the three free Safety Training Seminars, resources, in the form of training videos, picture communication cards and autism wallet cards were put in the hands, vehicles, detachments and trainers of PEI's Law Enforcement & First Responders. Every school age autistic child on PEI was given a wallet card as well.

Thanks to PEI's media - CBC Radio & TV, The Western Graphic , The Journal Pioneer, The Guardian and The Eastern Graphic (a number of times), good, positive, awareness about autism was spread across PEI.

Our message and purpose was discussed, throughout the entire planning stage, with a good number of autistic individuals. We also talked to parents and family members. Our message of highlighting ability, while recognizing disability, of demonstrating potential, and discussing appropriate supports, services & education, was supported by the autistic population.

Mr. Howard's message, that we are a lifelong burden and should ultimately be cured and prevented from being, while it may be shared by some big parent & professional run Autism Organizations, is not supported by Alex & I nor by any autistic individuals we know. This kind of social stigmatizing will do none of us any good. As well, his contention that autistics are a burden is simply not true.

If there is a single member of The PEI RoadRunners Club who believes Alex is a burden, please seek me out at the next run you're at and tell me that. I genuinely want to try to understand your reasoning. And, if you believe we are all such a burden, explain why your Club's executive saw fit to honour Alex with an award for Inspiring fellow members and me with an award, acknowledging my helpful, voluntary, contributions. If you honestly believe that people like Alex & I should be prevented from being, please inform and enlighten me. That is absolutely not the impression the PEI RoadRunner's membership has given me these past 4 years.

If you feel a need to support someone running for autism, and you want to keep the funds on PEI and benefits autistics, The Runman Fund is still open. (If you want to fund an autistic-friendly National or International organization, ask me, I can recommend a few). Write a cheque to "The Runman Fund" and take or send it to The PEI Council of the Disabled. I promise you it will be put to good use. Although every Police vehicle and Ambulance has a picture communication card, our extra funds ran out after supplying only one of every three Fire Department vehicles. We would very much like to supply the other 2/3 as well as the schools and medical personnel who have requested them. Still, what we accomplished was well beyond what we had hoped to. Alex fulfilled his dream of running across PEI, we raised awareness, our message was heard far beyond just PEI and inspired others, we brought Dennis Debbaudt to PEI and presented 3 free Autism Safety, Recognition & Response Training Seminars and had money left over to put resources in the hands of the people who should have them.

We do not support Mr. Howard's "Run The Dream". Why would Alex support anyone who considers him to be a "burden" and have a wish to prevent people like him, his brother and his mother from existing? Would you support someone who felt that way about you? As much as I wanted to like and support this guy who wants to run across Canada in the name of autism, I cannot support his harmful message.

If you ever ran behind Alex prior to August 2006, you might have read the message on the back of his T-Shirt, it's the same message that's on the bottom of every race post he blogs -

If you didn't understand his meaning before, I hope you do now.

I also hope you care enough to listen to autistics speak about autism.

As a postscript, yesterday Karen McCarron was sentenced to serve 36 years in prison for murdering her autistic daughter Katie. What was the message Karen McCarron got that caused her to so want a life without autism that three year old Katie paid the ultimate price? Mike McCarron, Katie McCarron's grandfather, felt abandoned, offended and betrayed by "advocates" parading their "horror stories" about autism. Paul McCarron, Katie's father had a message of his own upon hearing the guilty verdict -

"I ask all parents especially those of children with disabilities to ALWAYS
love your children and be proud of them.
Cherish every moment you have with them.
Love, patience and tender efforts are the best therapies."

That is a message worth sharing.

~*~

Today is the United Nations declared World Autism Day.
Some things done in the name of Autism Awareness can, in fact, be quite harmful to autistics. Listen to the message. Do you actually believe it? Does it help autistic people? Would you repeat that message to our face?
Would you want it said about yourself and/or your loved ones?
Be aware.

Some comments from the Autistic/Autism Community:

• Autism Awareness Month Link of the Day: Tokenism
• Runman: Running FOR Autism, not AGAINST it
• "Why we don't support Run the Dream"
• Running FOR Autism, not AGAINST it.

Autistic Celebration Run - The Video

Up until now, Alex's video of his 300+Km, Tip-to-Tip on PEI, Autistic Celebration Run, was only available in 3 parts on YouTube. Now, for your enjoyment, here it is as it was intended, all one piece (~21 minutes) on Vimeo.

Alex made this short video as part of his presentation at the Prince Edward Island Marathon Speakers Series
in October, 2006.

Here is the introduction I gave it when we first posted it (in 3 parts) on his iRunan Blog:

"When Alex first told me he wanted to run across PEI, he told me he wanted to make a documentary about it. So, shortly before we took off, I rolled up my jars of saved quarters and loonies ($1. coins) and we bought a little video camera.

We didn't get a lot of footage. It was hard enough biking and keeping my balance, snapping all the photos I did was quite a bonus, but trying to video as we were in motion proved next to impossible. Every morning (except the morning we were in Charlottetown and discovered the camera had been left on and the batteries were dead) we started our day with Alex's commentary. We do have some footage from the trail, far more than made it into this final cut. His first movie was over an hour and a quarter long. Because, at the time, he was putting it together to show during our PEI Marathon presentation I told him he'd have to cut it down to about 30 minutes and he cut out all the actual Run video except, I think, a bit in Summerside, the Police escort into Kensington, and the bit at the end as he reaches the East Point lighthouse.

What he ended up with in this video short is a 21 minute video that tells the story of his run, in daily commentary of where we are and where we're going, his choice of photos from that day, and his choice of music to help tell his story. He has captioned it to accommodate his poor articulation so you'll all understand him.

Again thanks to everyone who helped make the Run possible and helped out along the way."

enjoy.....


The Autistic Celebration Run, Tip-to-Tip Prince Edward Island.