Canadian PKU and Allied Disorders - Avery's Ride for PKU

AVERY'S RIDE FOR PKU

When planning for Avery's Ride for PKU began almost a year ago, a team was assembled and goals were set.

The initial team was comprised of Kevin Dube, John Adams, Nicole Pallone, Tanya Chute and Jenn Pino. Many, many (many) others joined us along the way. A project of this magnitude does not come together without a lot of planning and we spent hours on the phone planning routes, discussing logistics, making decisions - and setting goals.

We had three primary goals for Avery's Ride for PKU:

1) To improve the sense of community among the PKU patients and families of Canada;

2) To increase the awareness and advocate for the needs of the PKU community; and

3) To raise funds so that CanPKU can continue working towards the goals of the organization.

Kevin didn't just dedicate his entire summer for Avery's Ride for PKU. He spent hours every week for the eight months prior to the ride planning, preparing and training. He had the support of his wife and family: a wife who was willing to stay home along all summer with their two young children, and who was still supportive of the adventure when she found out she was pregnant in January; a dad who was not only willing to donate his van for the duration of the ride, but who also drove Kevin out from Ontario to Victoria to start the journey, and who drove the support vehicle for the first two weeks of the Ride.

Kevin, we know you set out at the beginning of this Ride to honour your Grandfather, who passed away at the beginning of June while you were en route to the starting point. His work ethic and kindness was obviously an inspiration to you - we are all sure, without a doubt, that you did him proud with what you accomplished this year.

So, in honour of the whole Dube clan, this newsletter is a Special Edition that is focused on Avery's Ride for PKU. Please read the articles below, each highlighting one of the goals. And to each of you who were a part of this magnificent project, big or small - thank you.

Goal 1: A Greater Sense of Community

When Kevin Dube and the team started their ride across Canada, inspired by his own young niece Avery Dent, I am sure he can only have imagined how physically and emotionally challenging this ride would be for him, and the people he might meet across the way.

Back in 2013, when the whole concept of the ride was just being formulated, could any of us have known how successful, inspiring and touching it would be?

We cover Kevin Dube and his travel teams' journey across the country with excerpts taken from his blog site: http://www.rideforpku.ca/english/blog/?start=26

When anyone plans a big physical challenge, asides from the financial and planning aspects of it, surely you would ask the question, am I really up for this? Can I really do it? When Kevin first started planning the trek, and questioned if he was really going to be able to do it, what kept him going?

Kevin stated in his November 26, 2013 blog, "When I start to doubt if something like biking across the country is even possible, Avery's smiling face is a real reminder of why we are doing this." He of course wondered how his wife and two small children would fare in his absence, and on May 24th he blogs: "I really want them to know that sometimes its not all about doing things for yourself and its important to make sacrifices for those you love, especially your family."

The Official Announcement for Avery's Ride for PKU was made on January 31st, 2014 and covered in a number of media links: "PKU uncle will cycle across Canada in 71 days this summer to raise awareness and $25,000." (from PRN Newswire). Below is the CanPKU brochure advertising the event.

In reality, Kevin had already begun his training and planning many months before. By March 24th, with better weather approaching, Kevin was able to move his training outside. On May 25th, with one week left before the ride starts, things started hitting home. "I'm realizing the hardest thing about all of this is not going to be climbing mountains or biking crazy distances every day for two and a half months, but its going to be leaving my family for the whole summer," and on June 1st, when he had already left for the ride start point he says it "was extremely tough leaving the family at home. Its going to be a tough few weeks before returning to see them."

Finally, day 1, June 7th, and mile 0 begin with hope and optimism. Kevin was joined by Svend Paulsen, an avid cyclist who has a distant cousin with PKU, who also dedicated his whole summer to Avery's Ride, and a local resident and cyclist named Ken, who is also a cousin of CanPKU President John Adams - already, the Ride was bringing PKU community members together. "Its going to be long and difficult but its also going to be a great experience. I hope we can raise lots of awareness and funds for PKU. I really hope that somehow this will make a difference for Avery as she grows up and for the PKU community as a whole," blogs Kevin afterwards. Mile Zero was accented with a generous donation from strangers who had never heard of PKU but were moved by the cause - awareness was already being raised.

In Vancouver a small get together joined more PKU community members, including a PKU adult from the UK who was in the city visiting family. In Hope, a waitress donated some of her tip money in support of the ride. On June 9th Kevin started a very physically challenging section of his ride - Merritt and the Coquihalla mountains. "Today was the day I was nervous about from the start of planning. It was the day I would have my first real climb in the mountains. Not just the first of this ride, but ever."

Days 4 and 5 were spent in Kamloops staying with PKU adult Amanda Cosburn. Of that stay Kevin says, "We had some food, did a bike/walk around the island and had some great conversation with the people there. There is quite a big PKU community in Kamloops and it's great that they can all get together and share stories and help support each other."

In Salmon Arm, more PKU connections were made when PKU grandparents put the Avery's Ride team up in a hotel, took them to dinner and also spoke with media. In Cranbrook, CanPKU VP Nicole Pallone's mom put the boys up for the night and provided meals, and Nicole took over hosting when Aver's Ride hit her hometown of Sparwood, BC.

Alberta also saw the PKU community come together: accommodations and meals were provided by two different families in Claresholm; Accommodations in Calgary were arranged by Calgary PKU Mom and CanPKU Sponsorship Chair Sandra Harland; Edmonton saw an event hosted by the Lenkenhoff family and PKU relative Theresa Garskey arranged for several free hotel stays. As Kevin wrote about Vegreville, "The manager here even asked for a stack of postcards that other guests could take and learn about PKU and the ride. This is really helpful is spreading awareness regarding PKU,"

In Saskatchewan, Saskatoon residents Heather Garton and Jodi Hoover made arrangements for this leg of the journey, where Kevin spoke at a school gathering. By June 25th, Kevin and the team were pushing on to Regina, with strong winds making the progress slow. "The wind really messes with your head. In my opinion the physical challenge of riding in the wind is not even close to the mental challenge it poses," blogged Kevin. In Regina, Kevin and the team attended a BBQ hosted by Lyle and Linda Stewart, "It was really encouraging to have the Minister of Health from the Saskatchewan Government attend the BBQ and hear about the ride for PKU," he said. At this event, "I was stunned to learn that at the end of the night over 2600.00 was collected for the ride," which "officially put us over the 25,000.00 mark eclipsing my goal for the entire ride before we had even made our way through Saskatchewan."

By June 28th Avery's ride had reached Manitoba. More unfortunate weather followed, with fog and rain causing concern for Kevin, "We woke up today to Fog, and lots of it. I was a little nervous starting out on the road in that much fog but with my flashing light Svend assured me I was visible.... and then the rain started, and it poured!" FInally, by July 2nd, some decent weather arrives and a few days later Kevin reaches beautiful Falcon Lake, Manitoba. He was excited with this milestone, he blogs, because "next day was the day I've been looking forward to for a while, the day we enter my home province."

On July 9th, "The ride today to Terrace Bay was absolutely beautiful, and one of the best days we have had so far," and then the group was on to Marathon, where friends had set up a "meet and greet at the mall today and we were able to pass on some info about PKU to many of the people who were out shopping." After this, right into Blind River to stay with hosts Muriel and Wayne Orton after the "total ride yesterday was supposed to be 76 km but turned into 219 km, the longest ride I have ever done and it felt good to get a 200 km day in."

On July 21st Kevin arrived at his home to spend a few much needed days with his family after 46 days away. " I had a great day with the kids and my parents. Sarah came up Friday night and it was nice to be together as a family for the first time in more than a few weeks." And on staying a few extra days, "It will be great to be here for a few extra days since we have modified the route slightly. It will be great to see lots of family and friends." There was also a big fund raising event in Kitchener, where Avery herself was in attendance, which raised close to $4000 for the Ride.

Later in the ride, in Oshawa on July 28th, Kevin and the team were able to stay at Svends' place and learned "that John Adams had arranged for us to meet Helen Dionne, who after having two children with PKU was a driving force behind getting new born screening to be made mandatory in Ontario. It really was pretty special to meet Helen."

Peterborough arranged a ride a long for locals through their local zoo. It was wonderful to have Kevin's family join him on this segment of the ride. Photo'd is Kevin and his son, and to the other photo you can find his pregnant wife walking on his journey. Other fundraisers also took place in Ottawa, contributing to all three of our goals.

While in Ottawa Kevin was able to tour the Newborn Screening Lab, which was interesting for him "see the machine that 11 months ago would have determined that Avery was positive for PKU and it was great to meet the people working in the lab, they are all passionate about what they do and it is so important." After this, Avery's ride moved into Quebec - arriving in La Chute on July 31st.

Arriving in Quebec City on August 5th, sometimes its the small things that become important - Kevin was happy to accomplish two desired goals on a much needed ride day off, "1. Laundry and 2. Eat Poutine! - successfully did both before noon!" and then spent the rest of the day walking around the city where he blogs, "The history in that place is unbelievable!"

On August 7th the ride continued and crossed yet another provincial border into New Brunswick and the East coast "the last leg of the journey and I'm looking forward to riding in the eastern provinces. We rode about 160km into Edmundston NB. It was a great ride, with great weather." In New Brunswick, the Avery's ride team met up with PKU Dad David Brennan, and were able to enjoy a large Acadian Festival going on at the time.

In Moncton on August 10th, the group attended an event at the local clinic that had been organized by Stewart and Marise Landry, and the next day were on the way to Charlottown, PEI where they attended an event hosted at the Culinary institute of Canada, organized by Natasha and Colin Moore, where the students were preparing low protein food options. Kevin says, "everyone who attended (the event) received a name of someone who had PKU and their challenge was to eat a meal based on the phe tolerance level of that person. It was an interesting way to educate the average person who may not know much about PKU, and it really put the diet in perspective."

In Halifax, Kevin, John Adams and local PKU patient Diane Little met with the Minister of Health, to discuss PKU and patient needs. Kevin is hopeful that this meeting will encourage the government to "review Nova Scotia's current coverage and hopefully make some changes that will further assist those in NS with PKU."

Avery's Ride for PKU ended on August 17th in St Johns, with local families welcoming them at a couple different events. "Finishing the ride was really cool but it was also a little odd to finally reach a goal we had been working towards for over 2 months and not have to get up the next day and figure out a bike route and get ready to get back on the bike," Kevin blogged on the day. "I tried to reflect a lot on the last day of riding. Part of me could not believe it was here, it seemed surreal."

What was most enjoyable about the cross Canada ride for Kevin? "Being able to meet people who have PKU and meet parents, aunts, uncles, grandparents, siblings and friends of those who have PKU was the absolute best part of this trip for me. "

One of the goals of Avery's Ride for PKU was to promote a sense of community for Canadians living with PKU. There is no doubt, as evidenced by the vast number of people who volunteered and planned events through the big and small towns the ride went through that this was accomplished. Please forgive us for not mentioning each and every person that contributed to this amazing journey! The Ride allowed people to connect and support one another and help us feel that we are not alone - Goal One was accomplished.

Goal 2: Awareness and Advocacy

Another goal of Avery's Ride for PKU was to raise awareness and advocacy, and we want to illustrate how this Ride created a vast amount of media and news coverage.

From Victoria, BC to St Johns', NL, many incredible stories of both Kevin's journey and those across the country touched by PKU have been shared in these articles.

Press Release - January 31, 2014

TELEVISION

Breakfast Television Vancouver (City TV): June 9, 2014

Breakfast Television Calgary (City TV): June 18, 2014

CKWS Television Kingston: July 28, 29, 30, 2014

CTV Ottawa: July 30, 2014

CHEX Peterborough: August 1, 2014

CBC Prince Edward Island: August 6, 2014

RADIO:

CBC Radio St. John's: segment aired on Monday, August 18

VOCM Newfoundland: segment aired on Monday, August 18

PRINT

Blue Mountains Courier-Herald - May 14, 2014

Elk Valley Herald - June 4, 2014 (page 4)

Stony Plains Reporter/Spruce Grove Examiner - June 6, 2014

Salmon Arm Observer - June 19, 2014

Peterborough Examiner - June 30, 2014

Claresholm Local Press- July 2, 2014

Waterloo Region Record - July 5, 2014

Cambridge Times - July 16, 2014

Peterborough This Week - July 17, 2014

Kitchener Post - July 24, 2014

Metro Ottawa - July 31, 2014

Chronicle Herald (Halifax, NS) - August 5, 2014

Waterloo Chronicle - August 6, 2014

The Guardian (PEI) - August 6, 2014

The Bugle-Observer (New Brunswick) - August 12, 2014

The Telegram (St. John's) - August 18, 2014

Southern Gazette - August 18, 2014

If you have an article to share that we may have missed, pleasecontact usto let us know!

Goal Three: Fundraising for CanPKU

The third goal of Avery's Ride for PKU was to raise funds for Canadian PKU and Allied Disorders Inc., the only Canadian PKU organization dedicated to providing support to patients and families living with PKU and other allied disorders. This goal was met with resounding success and the final total far exceeded our initial goal.

In the many months of planning that occurred prior to the ride, we discussed what this goal should be. Too high and we would be disappointed if the goal was not met. Too low and we might surpass it early on and have the donations stop. Finally we settled on $25,000 as a realistic, attainable goal that we would still be very happy to meet.

By Day 1 of the ride, we had already raised several hundred dollars through the online donation option - special thanks to the Canadian Organization of Rare Disorders (CORD) for facilitating that program and allowing people to receive tax receipts for donations over $10.

And on Day 1 of the ride, at Mile 0 in Victoria, we chatted with complete strangers about PKU. We educated them a little about the disorder and they surprised us with a very generous $40 donation. Throughout the ride, it was this that impressed us most: the willingness of complete strangers, people who had never heard of PKU before, to open their hearts and wallets and help us reach our goals. Anonymous friends who left an envelope with cash under the windshield of the van and strangers who bought t-shirts in support of the Ride were as important to us as the companies that donated hundreds of dollars.

On Day 19, less than 3 weeks into the 10 week adventure, we hit our first goal of $25,000. It was an incredible feeling for Kevin, Svend and all of us who had worked behind the scenes to plan and prepare for the Ride. At that point we had a good estimate of what the expenses for the ride would be and we decided to set a second goal of $40,000, which would cover the expected $15,000 of expenses and still leave us $25,000 to support the goals of CanPKU. With so much of the Ride still left to complete, we felt fairly certain that this goal would be reached: and it was, before we hit the end of July!

When all was said and done, the generosity of Canadians (and a few Americans!) totaled a whopping

$64,693.67!

Although some expenses still need to be accounted for, this leaves us with approximately $50,000 for CanPKU to continue supporting, educating and advocating on behalf of PKU patients and families.

Due to the outstanding success of this project, we are also looking at how we can offer financial support of PKU research for the very first time in the history of this organization.

Avery's Ride for PKU was more successful than we expected and we have you to thank for it.

Whether you donated $10, bought a t-shirt, organized an event, hosted the team overnight, bought them a meal, donated a silent auction item, attended an event or simply cheered Kevin along across the country, you helped make Avery's Ride for PKU a success and from the bottom of our hearts:

THANK YOU.

And to Kevin Dube, the man with the mission, from everyone at Canadian PKU and Allied Disorders Inc. and everyone who benefits from the CanPKU organization:

THANK YOU.

Check out all the images in our photo album for Avery's Ride for PKU

CONTACT US

260 Adelaide Street East, #180
Toronto, ON, M5A 1N1, Canada
Toll Free: 1-877-226-7581 (1-877-CANPKU1)
Email: info@canpku.org