Avery's Ride for PKU

Avery’s Ride for PKU Summery

** taken from the latest edition of CanPKU news/ written by Nicole Pallone**

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.”

Kevin, Svend & Ken - Mile 0

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 startof 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 upFriday 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.  Other fundraisers in Peterborough and Ottawa also took place, contributing to all three of our goals.

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.”

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.

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, please contact us to 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.
Avery's Ride for PKU

We did it! – Article by CanPKU news!

Thanks to the amazing generosity of people everywhere, Kevin has reached his second goal of raising $40,000 for CanPKU!

It is truly remarkable how a selfless act can inspire others.  After riding 5,522 km of this incredible 7,382 km journey, we have pulled together in raising a tremendous…

 

$42,076.68!!!

 

How much can
we beat the goal by?!
As you know, CanPKU supports PKU patients across the whole country by offering assistance to patients and families; by offering education opportunities to patients, families, friends, medical professionals and teachers; and by advocating on many different levels for better access to clinical care and treatments.
The needs of the PKU community far outstrip our resources, so the more money we raise, the more good we can do!
How to Make a Contribution:
Pour contribuer :

  • Avery’s Ride for PKU t-shirts are now available in youth and adult sizes. Buy your special edition shirt when Kevin cycles into your town for $15, or order online byclicking here (shirts online cost $20 each to offset the cost of shipping).
  • Make an online donation on the CORD Donate site by clicking here. You will receive a tax receipt for any amount over $10.

 

 

 

Our warm thanks go out to the hundreds of people who have been a part of this amazing project: people who have hosted Kevin, Svend and Jim along the way; people who have organized or attended events; and people who have bought tshirts, made donations, contacted local media, offered advice or even just given words of encouragement –

you are all a part of something truly special!
Sincerely  |  Cordialement,
JA sig
JOHN ADAMS
President – Canadian PKU & Allied Disorders Inc.
Président – PCU Canada et maladies apparentées

NICOLE PALLONE
Vice President – Canadian PKU & Allied Disorders Inc.
Vice-présidente – PCU Canada et maladies apparentées

 

Avery's Ride for PKU

Avery’s Ride for PKU- Interview with the team.

IMG_3672 IMG_3625 IMG_3626

 

After the event Cole, Kevin, Svend, Jim and I  came back to our house and Cole made pizza.  While we where eating  I had the chance to sit down with the boys and interview them about their journey. I wrote down my questions, and jotted down their answers in short form. So the interview transcribed here is not verbatim but as close as I can get too.

I must stay I really enjoyed getting to know the team and will be following their journey the whole way.  See below for the interview:

Thank you all so much for today. Thank you for doing this great event , and taking time to do this interview with me for my blog. I have written down a few questions that I would like to ask, and I will be taking notes to transcribe to my blog.

Svend :  jokingly : a few ( knods at papers) Laughs.

My first question is for Kevin:

Amanda : Kevin: When did you first learn about Avery’s diagnosis, and how did you react?

Kevin: about 1 week after her birth Kim and their family where called to the hospital and told that Avery has PKU. Sarah had gone to the hospital with her and they called to tell me. Sarah was sad and wanted to support Kim. Something Kim said stuck with them, Kim said ” I don’t even know how to be a mom and now have to deal with PKU too”

I immediately googled PKU and found both your ( Amanda’s Blog ) and Kevin Alexander’s video about PKU. That video really helped. Some things I learnt where scary, others gave me hope.

Amanda : Since the diagnosis and beginning this journey, how has PKU effected you or changed your life?

Kevin: Now we are constantly thinking about what we can do as a family to support to Avery and our family. Making sure Avery and our family has everything they need. That we can care for Avery when she comes to our house, and even when she comes over to our house on her own when she is older. That we would be able to mange her PKU. A family does everything they can do to help family. This could have been anything , but it was PKU. It would have been the same from us with anything else.

Amanda : I read on facebook that Sarah, your wife is pregnant, now that you know about PKU , does it make you think about her pregnancy and the baby?

Kevin: Yes , Sarah is pregnant. We have thought about her being a carrier now that we know her sister is. If we where to have a child with PKU , it would be a lot less stressful than a year ago.

It must be hard being away from your family. What is the hardest about being away right now?

Kevin: Well I was the one home with them, I was on prenatal leave. So I just miss the day to day. We have 2 kids. Charlotte  who is 1.5 years and Jonathan who is 3. Of course one on the way too. I don’t miss the night take wake ups though!

Amanda : Svend what is your connection to PKU and how did you get involved in this event?

I have a cousin who emailed me , tells me she has a daughter living in Ottawa that has a daughter who has PKU. She told me she heard about a man who is riding across Canada for PKU. She thought I might be interested, since I have the time. I am retired and I like to ride. She thought maybe I could help him out. I do a lot of volunteer stuff. I checked out the website and looked at the list to see what I could do. I did not want to organize or talk to large groups of people. I thought maybe I might bike a little with them, or meet them somewhere, or drive a little? but then I thought If i was going to bike a little , why don’t I bike a little more? After John and Kevin came to my house to meet me it just progressed to more. I had not considered doing a ride across Canada, or if I would do the whole ride. It just sort of progressed. With the family connection it became more important.

Amanda : Kevin, How did you come up for the Ride across Canada?

Kevin: I had done the Bike ride for MS and was looking for some sort of event like running or riding that I could sign up for to show my support. I did a search and came up with a blog of a man Named Dick Michaux and his website :  http://pkucycleamerica.com/ who did a ride across the states for his daughter and the National PKU Alliance. I was inspired and began looking for something like that in Canada. When I found CanPKU I saw John listed as the president and decided to email him to see if there was already something like this. John suggested I organize a walk a thon, but that just didn’t sit well with me. I wanted to do more.  With the inspiration from Dick, and having 3 friends who rode across Canada years ago. I asked John about a bike ride and then reached out to my friends and asked  them for information and advice. Then after connecting with Svend the idea to do it across Canada came about.

Amanda:  Jim, When did you first learn about PKU and What Kevin was planning to do?

Jim: I am Kevin’s Father and  I learnt about PKU when Kevin called to tell me his plan. You see it is his wife’s sister whose family this is , so we don’t have much of a connection. Kevin told me he was looking for a driver . I had 3 weeks left of my vacation so figured I could donate my van and drive with them from Victoria to Edmonton. Then if they cannot find another drive I can see about taking some leave.

Amanda : Team, do any of you have any experience with anything like this? or with fundraising?.

Jim : No not really. I travel though and have experience with  long trips. My wife is use to me being away, and now there are no kids at home. I have the time. I do Volunteer for the Kinsmen Club as a member at the local club.

Svend: I have spent a lot of time biking. I have even gone on rides through a company that took me around Africa.

Kevin : Just with the MS bike ride .

Amanda : What did you do or how did you train for this event?

Kevin : Lots of training on an indoor stationary all winter. Then I tried to get outside for at least an hour a day. Increasing my KM. 3 times a week I tried for a longer ride. Weekends are hard with 2 kids. No real changes to my diet. We do have a lot of water, try to take rest breaks and snack breaks. Gels and protein bars are good for the longer parts.

Svend: Lots of long bike rides! Spin training . I had experience already, I am not in the same physical shape but I have an idea what to expect. I am one of those, don’t do what I do . My diet is coffee, ice cream and peanut butter.

Amanda : What has been the hardest thing so far .

Group : being away from family.

Kevin : My grandpa died 4 days into this, his funeral is today actually. So not being there for my family, Not being there for my mom, or my kids. Jonathan doesn’t understand death yet. I wish I was there to explain and help him grieve.

Amanda : I am sorry for your loss.

Amanda : Are you nervous going forward? what are you apprehensive about?

Kevin : BEARS! Also its a really tight schedule, so if anything happens it could really change the schedule.

Svend : body break down, injuries, sever weather . Anything that effects the schedule.

Amanda  : I know you are only a few days into the Journey but what have your favourite spots been so far?

Kevin : Vancouver and Kamloops, anywhere we have been able to meet and interact with people. Its been nice to see the community come together. To talk to people and hear their stories.

Svend : Victoria as its a beautiful city, but same as Kevin, Vancouver and kamloops for getting to meet people.

Jim : Victoria. For the Kick off. It is a beautiful city. I enjoyed the parliaments, the harbour and that area down there. we got to stay in a hotel close to it. Also meeting Nicole, she is fabulous!

Amanda : Yah I use to love summers down town. All the tourists and when the causeway opens up. They have street performers and sales of arts and crafts. They are very talented.

Amanda : Going forward , what area are you most looking forward to visiting and why?

Svend: For me its Regina,  I have family there, and Ottawa where my cousin with PKU lives and meeting them. Blood is thick. Family means a lot.

Jim : Edmonton ( jokes not because that is where he ends) If I was continuing on I have  always had a dream to see St. Johns. I have made it to Newfoundland but not St.Johns.

Amanda : starting this process, what where your goals and how have they changed along the way?

Kevin : My only goal was to make a lot of money. Either to find a cure or to fund the home testing device. After talking to John and being more educated on PKU and the problems we face here in Canada, I learnt that Community and education was very important. So If that is what is needed that is what we will do. Also if we raise enough money we can have a voice in deciding what research to fund. Dick and NPKU do a lot of research so he might be considered.

Amanda : Has John told you about Dr. Jerry Vockley? I have met him twice and he is a wonderful doctor and speaker. If you ever get the chance to meet him or listen to him talk, please do. It is worth it. Dr. Vockley is doing a lot of research also specially with treatments for PKU. I really learnt a lot from his speech at BC PKU day this year and his hopes for the future of PKU. I did a summery of his talk on my blog. You might find it very interesting.

Kevin / Svend : We will look him up.

Svend: For me it was, squeaky wheel gets the oil. With all these other causes getting funding like Terry fox, cancer, diabetes, and all the runs and rides supporting something .. why not PKU? Now that PKU has been brought close to home and touched my family, why is it not supported in the same way? It needs funding too. The goal here is to get more people aware, maybe then the province’s and the Governments will change too.   Also the more people who know, the more it will take the pressure and stress of new diagnosis.

Amanda : Thank you so much for taking this extra time to sit down and do this with me. I have a lot of notes here to go through and make into a solid blog post. Again , the words will not be per verbatim but as close as I can get them . I will post it as soon as I can and send you the link.

As we close here, any final words you would like to share?

Jim : Thank you to all the hosts. To everyone who has supported us. For everyone who has volunteered, offered lodging, giving meals and support. It is greatly appreciated . Since starting and talking to both Nicole and Amanda I have learnt a lot. As well as all the families along the way.

Kevin : Please see our website http://www.rideforpku.ca , read the blog, view the photos, make a donation, buy a t-shirt. Share share share as much as possible. Spread the word! tell all your family and friends. Since starting this It has spread, all my family and friends know. Even my church.

Svend: If you are reading this, please PASS IT ON!!! Like I said, squeaky wheel gets the oil. Spread the word.  I have to say though Kudos to Kevin. Kevin ” Look what you have done, Look what you started!!”

We all congratulate Kevin!

 

For more information on Avery’s Ride for PKU please follow their blog, visit their website, like their page on facebook. Kevin and his team are still looking for free accommodations along the route. If you think you maybe able to help, please email me or any member of the team!

Here is the list of city’s where they are still seeking accommodation. Also please share this post!!

Tuesday, June 24 Davidson
Sunday, June 29 Portage La Prarie
Mon, June 30 & Tues Jul 1 Winnipeg
Wednesday, July 2 Prawda
Saturday, July 5 Ignace
Sunday, July 6 Upsala
Tuesday, July 8 Nipigon
Wednesday, July 9 Terrace Bay
fri jul 12 Wawa
sat jul 13 Batchawana Bay
tues jul 16 Espanola
weds jul 17 South Bay Mouth
thur jul 18 Tobermory
sat jul 20 Palmerston
sat aug 2 Trois Rivieres
tues aug 5 St. Pascal
weds aug 6 Edmunston
sun aug 10 Borden Carleton
wed aug 13 New Glasgow
thur aug 14 Port Hawkesberry
fri aug 15 North Sydney
sat aug 16 Argentia
(i should note that we do have a cabin offered north of Winnipeg, but it would be best if he could stay in the city).
Thanks everyone! let us know if you can help!

Thank you. Your PKU Friend Always,

Amanda

 

 

 

 

 

 

 

 

 

 

 

 

Avery's Ride for PKU

Avery’s Ride for PKU Kamloops Event.

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Avery’s Ride for PKU arrived in Kamloops on Tuesday June 10th. I had been working hard on organizing a great event and had been a ball of stress for days hoping everything fell into place.  I woke up early to do some more media and social media advertising, check in with contacts and make my to do list.  Then I had some errans to run , donations to pick up, food to buy, decorations and things for kids to play with.

Kevin and his team arrived at my house just after noon, Cole held a BBQ and they all had burgers. I made some pasta. We got to chat and get to know each other.  We had to be at the venue for 3 pm so it was time to load up the trucks. Luckily Cole’s worker and his gf came by to help and attend the event. We picked up a table and had one dropped off to us too.

We arrived at the venue and Bri and Kyla arrived to help us set up. We had received a license to use the the gardens and there was a nice cement compass in the middle.  We set up 4 tables. One for Wrist band sales and donations. One for the Silent Auction, one for a child’s table, one for t-shirts and then the picnic table under the shelter area for food.

We had 30 guests. Which made me so very happy! Bri and Kyla’s families and a few other PKU families and supporters. . Kevin and the team, Cole. Trevor and his gf for Brandy. Brandy volunteered her time and did some face painting.

At about 445 we took off as a group to conquer the trail around MacArthur Island. Cole and Kevin led us off on their bikes. Along with Svend his friend and the kids on the bikes. The rest of us walked behind. We did the shorter trail for the little kids who where just learning to ride.  The weather held and it actually got very warm. With the sales of t-shirts, wrist bands, donations and the silent auction we raised around $500.00

I am very happy with the way things went. A big shout out to everyone who helped make it such a success. It would not have happened with out everyone.

Thank you to Tyler Donovan, Melisa Trayer and Kyla Cain for donating tables. Kyla and Wes for brining the fruit platter. Kyla for buying decorations. Bri for handling the Silent Auction , baking low protein cookies, and brining food! Thank you to Brandy for face painting, and everyone who helped set up , tear down and make this day happen!

Most importantly to Kevin and his team for making this happen, for riding across Canada for PKU and bringing awareness to PKU and bringing the community together.

 

 

 

Avery's Ride for PKU

Avery’s Ride for PKU

Avery’s Ride for PKU kicked off on June 7th in Victoria BC at the Parliament Buildings. Nicole Pallone and Rosie flew to Victoria to meet up with Kevin and his team.

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I am so happy Kevin and his team got to experience my home town when it was sunny and not in the rain that it is known for. I wish my family and friends were there to see him off . After dipping their bikes in the ocean the team took off for the ferry, Along the way 2 ladies saw them on the side of the road and stopped to donate 40.00. Once on the ferry they  met a lady who was also riding her bike from Victoria to Calgary. Lyda will ride her bicycle from Victoria BC to Calgary AB starting on June 7th 2014. She will then hike 300kms with a goal of reaching 15 mountain peaks between July and August. Her goal is to raise funds for Green Teams of Canada and raise awareness.

As luck would have it Vancouver greeted them with another sunny day!  There was an event and official kick off at the Chan Auditorium at Bc Children’s hospital. Kevin was also featured on Breakfast Television!

http://www.btvancouver.ca/videos/3613602069001/

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Day 2  Vancouver to Hope:

Day 2 took the team to hope BC. A lady donated a room at the travelodge, an Kevin Learnt that Hope BC is where the movie Rambo starring Sylvester Salone was filmed.  Kevin and his team also learnt about Highway to hell.

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Day 3 Hope to Merrit:

Kevin and his team made it to Merrit and  conquered the coquihalla this far and met two lovely ladies at the ramada who donated to the ride. They also arrived to learn that the ramada had a complimentary room waiting for them on arrival.

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Day 4 :  Merrit to Kamloops!

miles
68.50
hours
4:27:02
mi/hr
15.38
Elevation gain (ft)
4,021

 

Kevin and his team enjoyed the ride to kamloops as it was nice and flat for the most part.  Kevin and his team made it to kamloops just after 11 am. I had been up planning since about 6 am with all the things I had been putting off that needed to get done.  Kevin and his team arrived at my house around 1230pm and we had a BBQ for lunch. Cole made burgers and I had a pasta salad. After loading up the Vehicles we headed over to McArthur Island for our event. But thats a hole nother blog post coming soon! After the event I even got to intreview the gang. You will also have to wit for that post to. I promise its worth the wait.

 

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Day 5: Kamloops to Salmon Arm.

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After leaving my house at 730 am the boys headed out to Salmon Arm . It was about 120 km to the Hotel. They stayed at the Comfort inn, and they where able to educate the staff on the cause. Also met with a reporter ( will be sure to post the link when its up) Had dinner out with a local family and are preparing to ride to Revelstoke today.

 

Please see Kevin’s own personal blog about his ride and the experiences all the way. Kevin is also posting photos! You can follow the route and even make a donation. Also don’t forget you can also purchase a t-shirt from Avery’s ride on the site.

You can find his blog at http://www.rideforpku.ca

 

 

 

 

 

 

Avery's Ride for PKU, CanPKU

Avery’s Ride Across Canada for PKU!!

7,382 km
Across Canada
Saturday, June 7 to Sunday, August 17, 2014
Traversée du Canada
Du samedi 7 juin au dimanche 17 août 2014
To learn more, please visit:
Pour en savoir davantage, veuillez visiter :
To donate:          Pour faire un don :

153

Dear  Amanda,  

 

Hello, my name is Kevin Dube and this is my sweet little niece Avery. She was born on August 24, 2013 and was diagnosed with PKU just a few days after she was born.
In June, I will embark on a journey across this great country.  My niece is my inspiration for this ride, however, this is also a national issue and I hope my ride across Canada will:
Raise awareness regarding PKU;
Advocate so that better coverage for medical food, formula and other treatments may be available to all of those who have PKU, including Avery;
Raise money for Canadian PKU & Allied Disorders (www.canpku.org) to help them accomplish their goals; and
Promote a sense of community for Canadians living with this rare disorder.

There are many ways you can help, including:

 

– Organize a local event (such as a picnic) at any of the route stops;

 

– Volunteer at a local event;

 

– Attend a local event someone else organizes;

 

– Be a driver for the support vehicle for the whole route or whatever part you can manage;

 

– Ride-along on your bike for a portion of the Ride

 

– Offer food and/or lodging for Kevin and the support driver if you live in or near one of the stops;

 

– Donate gas, hotel or restaurant cards to the Ride (remember that you can cash in Air Miles™ or other rewards points to obtain these for free!);

 

– Make a donation atwww.corddonate.ca/AverysrideforPKU (you will receive a tax receipt for any amount over $10);

 

– Forward this information to your friends and family members to see if they are interested in helping with this exciting project;

 

– Post the link towww.rideforpku.ca  on your Facebook page, or tweet about it (follow us @canpku);

 

– Find out if a school in your area is interested in having Kevin speak;

 

– Reach out to any contacts you have with the media, business, or communities groups to promote this event or become a sponsor (check out the Sponsorship Packages for this event posted atwww.rideforpku.ca/english/sponsors/)

 

Please let us know how you can help make this wonderful event a success by contacting the CanPKU Secretary, Tanya Chute (Tanya.chute@canpku.org) or Vice President, Nicole Pallone (nicole.pallone@canpku.orgor 250-910-6426).