Well the ride ended a few days ago and I’ve finally decided I should write one last blog.  I have spent the last few days exploring St. Johns and figured I could wait until the 17 hour ferry ride back to Nova Scotia to actually write something.  This also gave me a little more time to process what exactly it was that I did this summer.  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.  I think getting off the ferry and seeing the Newfoundland sign filled me with adrenaline.   I did not get a good night sleep on the ferry.  At around 1am I got quite claustrophobic because the rooms were so small.  It may have also been the nervous excitement I was feeling about the next day being the final one in this long journey across Canada.  Anyway I got a few hours sleep in the main lounge area of the ferry but it was not the ideal sleep I was seeking before riding the last 120km.  Like I said though when I saw the Newfoundland sign I was really excited to get going.  Svend had talked about being open to break the final distance into two days depending on when we landed and how strong the wind was etc.  I agreed but what Svend didn’t know is that nothing was going to stop me from wanting to hit St. John’s in one day.  I was excited to finish and I was also excited to see what I could of St. John’s before we had to leave after only a few days.  The nice thing is that we assumed the ride was going to be about 150 km however just after we left the ferry we saw a sign that said St. John’s 119 km.  We assumed it would be a little longer depending on where we ended but it was nice to know it was not going to be as long as we had thought.  I tried to go slower and enjoy the scenery, which at times was easy because of the long steep hills.  The wind was not in our favour but was not terrible either.  I think because it was the last ride it was not as big of a deal.  Immediately after we got off the ferry we had a decent climb and then a really nice view.  We stopped a lot to take pictures on this last day.  I can’t wait to come back to Newfoundland and see more of this beautiful province.   I tried to reflect a lot on the last day of riding.  Part of me could not believe it was here, it seemed surreal.  I thought a lot about riding through all the other provinces, the mountains, wind, rain, floods and great weather too.  It seemed like forever ago that we left Victoria.  I thought a lot about all those we have had the privilege to meet along the way, both from the PKU community and just random strangers we were able to tell about the ride and about PKU.  I have said this a few times at the last few events but when this ride started I really had no idea how many I would meet and I really did not have any expectations.  I would have been completely satisfied riding from coast to coast not meeting anyone else knowing that Jon and Kim were supportive of the ride, hoping that it could make some small difference for Avery.  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.  By the end of the trip the card we made that had a picture of Avery on it could definitely be filled with many other people.  I was going to attempt to list everyone we have met and thank everyone who has helped, donated, supported, fed, and housed us but I know I would miss someone so if we met you on this trip, thanks for everything you did to help make it successful.  I do have a few examples that stick out as pretty significant for me.  One was getting an email from a family in Saskatchewan that drove 3 hours to the BBQ in Regina.  I was so happy to hear that they were able to connect with other families who have children with PKU and will remain in contact.  They expressed to me that this was important for them.  It was also cool because I had met other family members of their in Salmon arm and Kamloops.  I have been told more than once that this ride has created a sense of community for many people we met and a support network that was not necessarily there before.  I had no idea if this was going to happen before we started and I could not be happier to hear that this has happened.  I also received a really cool email from Sean and Alison in Ottawa.  Their daughter Liberty has PKU and they planned the event in Ottawa.  Their nephew was following the ride and from what they tell me he was quite inspired by the bike ride.  Again, perhaps it’s naive of me, but I never knew if the ride would inspire anyone but to hear that it did, especially a young person was really rewarding.  We also had a few opportunities to meet with those in government who are in charge of making decisions regarding the treatments and coverage that is available to PKU patients.  I can only hope that this is the start of some improvements in those provinces that are not providing as much as they could or should be to those that have PKU.   Being able to meet people with PKU who were doing well was also great.   

Some other highlights for me were getting to ride my bike with Avery’s dad, my brother in law Jon and friend Jeremy.  Thanks for coming along for a few km’s guys, it was fun.  Having my family join us for a week while we rode from Kitchener to Ottawa was unbelievable.  I assumed it would be hard to be away from them but it was way harder than I was prepared for.  I hope in part that the bike ride will help Jonathan and Charlotte and our new little one understand some important lessons about family and sacrifices etc.   It was also great having my dad on the trip for the first few weeks.  It was pretty special to be able to drive out to Vancouver with him and have him there for the start of the journey.  Thanks to mom and Dad for lending us the van all summer and for helping with the kids with Sarah.  Thanks to Sarah’s parents as well for all your help and encouragement throughout the summer.   

I also want to thank all who spent time planning events, and those who helped raise awareness in your own towns even though the ride may not have come through your town.  We had some tremendously successful events that raised not only money but lots of awareness for PKU.  I’m still amazed that we were able to raise over double the original goal.  That would not have been possible without people like you who had an idea and made it happen.  Those events gave me tonnes of motivation to get back on my bike and continue to pedal. 

Thanks to all of the people who continued to let me know that they were praying for me.  For those who know me you know that my faith is a very important part of my life and to have my church and many others committed to this aspect of the ride was huge.  Thanks everyone. 

Thanks to Svend who unfortunately has passed on some of his sense of humour to me, just kidding, it was fantastic having you on this trip.  Your experience in cycling was a huge asset and I appreciate all the advice and suggestions you gave.  I also appreciate that you were happy to give an opinion and allow others to make the decision that made the most sense for the goals we were trying to achieve even when those decisions may not have been the best in terms of scheduling and riding etc.  Thanks for waking up early and keeping us on schedule.  Thanks for doing dishes, repairing flats, leaving van doors open, reorganizing the van numerous times and not getting to upset with me when I crashed into you because of my own stupidity.  You were quite graceful in that moment and I appreciate it.  Thanks for taking a chance this summer and committing to the cause despite not having ever meeting me.  Thanks to Linda Stewart for emailing you and asking if you would help.   

I also want to thank John Adams who joined the ride in Kitchener.  Many may not know that John lost his wife not long before he joined us on the ride.  From what I have heard and read about Marita it is evident that she was amazing person and she had gone through a real struggle in the last while before she passed.  John never left her side.  John is passionate about PKU, newborn screening and a number of other things.  John was a huge asset on the ride because he could answer virtually any question about PKU, an area that I was obviously not well versed in having only heard about it a year ago.  John,  I did not know Marita but I know she must have been proud of your continued dedication to the things you are passionate about.  I know that she would not have been surprised about your desire to join the ride when you did.  Thanks for coming along for the end of the journey.  It was great to have you with us.  

I feel like I have just verbally vomited everything that was in my head into this blog so hopefully it comes out ok.  Quite honestly people have told me that I inspired them this summer and that’s really flattering but I was also inspired.  I was inspired by parents who will do anything for their children who have PKU.  I was inspired by individuals who have PKU who continue to advocate for themselves and others so they can get the help they need and deserve.  I was inspired when I met Helen Dionne who fought for new born screening to be made mandatory in Ontario which has led to Avery and others being diagnosed at birth.   People now have a much brighter future had they not been screened because of people like Helen.  I was inspired to have met a few adults with PKU in Newfoundland who continue to press the government to provide them with treatment they need and deserve.    I was also blown away by the amount of money we raised.  Thanks to everyone who made a donation.  You may have been donating to a cause you know nothing about or have never heard of before so thanks for that.  It’s greatly appreciated.  To each and every person we talked to, stayed with, ate with, shared stories with, I genuinely hope we can stay in touch and if you are ever in Kitchener please get in touch and come over for a visit.  Feel free to message me at skdube@rogers.com if you want contact info etc or add me to face book if you have not already. 

Jon and Kim, thanks for being supportive of this idea.  I’m not really one who talks a lot but Sarah and I wanted to show you we care and we want to support you guys in any way we can with Avery.  We are blessed to have her in our family.  I hope the bike ride will help her in some small way as she grows up with PKU.  Sarah and I have said to one another on more than one occasion that she is lucky to have been born to such amazing parents.   We are so excited to watch her grow and develop into the person God has designed her to be. 

I was looking at the postcard that we had made up and have been handing out to people all over the country and on the back is listed the 3 goals of the ride.  The first one was to advocate for better coverage for all forms of treatment of PKU.  I think we have been able to do that in various ways.  We have met with a number of people in government who are connected to the decision makers around this type of thing and I hope our message was heard by them.  The second goal was to raise money for CanPKU so they can continue to accomplish their goals.  We were able to raise over $60,000.00 and it is hopeful that this money will allow CanPKU to continue to support the PKU community.  The third goal was to promote a sense of community for Canadians living with PKU.  I have received several emails and messages that indicated that his goal was also met.  This is what makes me the most happy about this bike ride. Community in any context is very important and especially when talking about something that effects a smaller number of people.  I hope we were able to help connect people to one another and create a deeper community and support network for those affected by PKU.   I want to thank everyone who helped Avery’s ride for PKU achieve these goals.  It could not have been anywhere near possible without people who helped out so thanks for that.  And thanks to the team of people who believed that this was a good idea and committed to help plan it way back in October or November (whenever that was) despite having never met me.  You guys are great. 

The last person I need to thank is Sarah.  Sarah you are an amazing person.  Some people were shocked that you “let me do this”.  What they did not understand is that this was not about you letting me do something.  This was about us doing something together.  I told everyone I could that you were as much a part of this as I was and that you had a much tougher job at home, pregnant, with two amazing energetic kids to look after all summer without me there.   Thanks for being such a great mom and wife.  I can’t imagine life without you.  Thanks for all you did this summer.  I love you

a couple of last things to add about the drive home, I wrote most of this blog on the boat ride over from Newfoundland.   We were able to meet a family with a 14 year old who has PKU.  We stopped in Louisdale and had lunch at their restaurant.  Thanks to the O'brien family for that.  Emily is able to eat a regular dirt because she has responded so well to Kuvan.  It was a pleasure meeting you guys.  We have also been driving all day long and just before we got to Centreville NB we got a phone call from David Brennan offering his house as a place to stay if it was needed.  Needless to say we took David up on this offer and are staying here for the second night in the last two weeks.  This was definitely an unexpected surprise for the ride home. Thanks David!!  

Merritt BC- June 9

Vegreville AB- June 19

Lloydminister AB-June 20

North Battleford SK-June 21

Davidson SK-June 24

Grenfell SK-June 26

Moosomin SK-June 27

Brandon MB-June 28

Portage La Prarie-June 29

Winnipeg MB-June 30 and July 1

Prawda MB-July2

Dryden ON-July 4

Ignace ON-July 5

Upsala ON-July 6

Nipigon ON-July 8

Terrace Bay ON-July 9

Marathon-July 10 and July 11

Wawa- July 12

Batchewana Bay ON-July 13

Espanola ON-July 16

South Bay Mouth ON-July 17

Tobermory ON-July 18

Palmerston ON-July 20

Kingston ON-July 28

Champlain ON-July 31

Trois Rivieres QC-August 2

St. Pascal QC-August 5

Edmunston NB-August 6

Borden Carleton PEI-August 10

Charlottetown PEI-August 11

Halifax NS-August 12

New Glasgow NS-August 13

Port Hawkesberry NS-August 14

Argentia NL-August 16

St. Johns NL-August 17

Click the link to see a video on PKU.  This was a video shown as part of a fundraiser in the United States and provides an look into the lives of those who live with PKU

http://vimeo.com/76158057

Announcing Avery’s Ride for PKU

PKU uncle will cycle across Canada in 71 days this summer to raise awareness and $25,000

TORONTO – January 31, 2014

A young father will ride his bicycle more than 7,300 kilometers coast-to-coast this summer to draw attention to a rare, brain-threatening disorder which affects his newborn niece, Avery. The Canadian PKU and Allied Disorders (CanPKU) non-profit association is proud to announce Avery’s Ride for PKU. This Ride is the brainchild of Kevin Dube, of Kitchener, Ontario, who learned about PKU when Avery was born and diagnosed in August 2013. This will be the first ride across Canada for PKU.

This exciting event will begin in Victoria, BC on Saturday, June 7th and end in St. John’s, NL, on Sunday, August 17th

Mr. Dube will cycle for 71 days through all weather and terrains, determined to make a difference for Avery and all those living with PKU. The route includes every provincial capital and the 16 cities with a PKU-treating clinic. Mr. Dube hopes to raise at least $25,000 for CanPKU.

"My wife and I knew that we needed to do something to support our family," says Kevin Dube. "After talking with CanPKU President John Adams, we decided that a cross-Canada bike ride would be a great way to advocate, raise awareness and fundraise for those families living with PKU."

PKU stands for phenylketonuria and affects about 2,000 Canadians. Untreated, PKU can lead to mental retardation and other neurological problems. It is managed by specialized clinics through a challenging diet by severely restricting the intake of all forms of protein containing phenylalanine ("PHE") and replacing missing nutrients through specially-made medical formulas and foods. Low blood-PHE levels and adherence to this extremely strict diet can be more easily attained in about 50% of patients with the aid of Kuvan, the first medication available to treat PKU approved by Health Canada in 2010. Due to differences in provincial health care, where you live has a direct impact on your ability to manage this disorder. Only three provinces publicly fund Kuvan, with extremely strict criteria reducing access, and several provinces still fail to fund the necessary medical foods and formulas sufficiently, especially for adults. PKU can be so devastating that each province and territory tests every newborn baby for PKU and has done so since the 1960s.

"Kevin has been astute in his short exposure to PKU in realizing that there is a lot of work to be done in this country to ensure that every patient living with PKU has access to all the treatments and clinical care and support they need," says John Adams, CanPKU President and CEO, and father of a young man with PKU. "There is not a single province or territory in this country that does not need to improve PKU funding in some major way."

There are several ways that the public can help this initiative and a full list can be found at http://www.rideforpku.ca/english/how-you-can-help/. CanPKU needs a support vehicle such as an RV or SUV donated for the cross-country tour, and will need a driver or drivers to help ensure Mr. Dube’s safety throughout the route. Donations can be made at http://www.corddonate.ca/averysrideforpku. People can offer food and/or accommodation if they are located near one of the stops by emailing CanPKU at tanya.chute@canpku.org.

"We really hope to see people inspired by Kevin’s selfless act," says Nicole Pallone, CanPKU Vice President, and mother of young girl with PKU. "Maybe you are retired and have always wanted to drive across this beautiful country, or maybe you have some travel points or miles that you can cash in for a gas card. However you want to contribute, it will help make this project successful, and in turn help everyone who lives with this devastating disorder."

For more information about the Ride and how you can help, please visit www.rideforpku.ca.

About PKU

PKU (phenylketonuria) is a rare, inherited, brain-threatening metabolic disorder, rendering the body unable to process phenylalanine ("Phe"), an essential amino acid found in dietary protein. The resulting accumulation of Phe in the blood is toxic to the brain and, if left untreated, symptoms can range from mild cognitive impairment to severe mental retardation. Approximately 1 in 12,000 to 15,000 infants in Canada is born with PKU. All provinces and territories offer newborn screening tests to determine if a child is born with PKU. If PKU is detected, the appropriate, aggressive treatment must be initiated immediately and maintained throughout life to ensure normal brain development.

About Canadian PKU and Allied Disorders Inc.

Canadian PKU and Allied Disorders Inc. is a non‐profit association dedicated to providing accurate news, information and support to families and professionals dealing with PKU and similar, rare, inherited metabolic disorders also detected by newborn screening. Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families. For more information, visit www.canpku.org and download our comprehensive resource for patients and families, PKU and the Brain.

Please join the conversation! CanPKU on Twitter, CanPKU on Facebook, CanPKU on YouTube

For more information, please contact:

John Adams CanPKU President & CEO 214-766-7012 (cell)John.adams@canpku.org  

Nicole Pallone CanPKU Vice-President 250-910-6426 nicole.pallone@canpku.org

Kevin Dube 519-208-4552 (home)226-750-3823 (cell)skdube@rogers.com