in 2008 I began working with a coworker and a friend from Slegg Lumber to organize the first ever Canadian Walk-a-Thon for PKU. The 2 of us and my best friend and the time worked endlessly for months on the ” first ever Victoria BC PKU Walk-A-Thon” Thus beginning my journey into being an advocate for PKU . We worked for months writing letters to sponsors, gathering donations, obtaining a venue, raising money to host the event our selves out of pocket, advertising, and getting an interview on the Shaw Daily news. We held the event in June 2008 at Jaun De Fuca parks and recreation. At the picnic shelter and chip trail. The trail was a loop that took about 30 mins. We had a 50/50 , door prizes, face painting, lots and lots of low protein food, and donations from PKU companies. We had T-shirts , food baskets, some cook books and food list binders from Virginia schuett at the PKU news and more. We had almost 50 people come out and walk. Including my family and coles brother. It was than that I met a PKU Adult my age Kim, and also Nicole Pallone. Rosie was only a few weeks old. They had taken the ferry over to join us. The Beginning of a wonderful friendship.
The money we raised at the walk a thon was donated and split between the BC Childrens Metabloic Clinic and the Vancouver General Hospital Adult Metabolic Clinic to go towards a food fund, for people who could not acess of afford low protein foods. I hand delivered the donations, extra t-shirts and materials the following month . This was also my first meeting with Dr.Stockler. They wanted to shake my hand and thank me. I don’t know who access the fun or if anyone did, after following up years later I used the adults half of the donations where used for a PKU adult who was pregnant and could not afford the food.
Upon hosting the event, I was contacted by President of Canadian PKU and Allied Disorders INC , John Adams. Who flew to Victoria and met Cole and I at white spot. After meeting with John and being in total Awe of his determination and stamina , I became one of the first British Columbia Representatives in CanPKU. CanPKU was still in its early years and as it is now, driven with ambition. I was so honored to be apart of it, as I am still honored today. It has been a wonderful experience to be apart of something so significant and an organization that I believe is in the process of changing history. I have learnt so much from having these experts in my life, I am always honoured to be around them and learn from them. I take every opportunity I can to stay involved. From working and volunteering with CanPKU from early on I have had the pleasure of watching it grow and expand , and make change in the world. I have seen people come and go, many who have still stayed, and I have also had the pleasure of watching the members and their reach grow and expand and am so pleased with the progress.
in 2010 I took on another fundraising event, and began working on organizing the next walk-a-thon to be held in Vancouver. John and I had have so many ideas and wishes for the events. I realized quickly that this event needed to be bigger and better and I knew that I could not do it alone. So I reached out to Nicole again, having have kept in touch since the Victoria walk-a-thon , I had gotten to know her well and new she would be a very valuable asset. Who had skills in event planning, organization and professional experience. We Co Organized the 2010 walk-a-thon and educational seminar. It was held at Lanagra College and though my nerves got the best of me, I was able to MC. I did a terrible job but everyone was so supportive. I know now and I am way more comfortable that I could do a much better job!! My advocacy work has really impacted my public speaking and I to have grown!
After the event in 2010, Nicole became the Vice President of CanPKU and we could not be happier. Nicole and John make an un-matchable team and have really driven CanPKU ahead . CanPKU has had its changes and though there is no longer provincial representatives, I am still happy to be apart of it as a volunteer. I helped co-organize the event in 2011 as well. In the 2012 and 2013 events I volunteered as the event photographer and though I did not nearly have as an significant roll in the planning, I am unable to let go completely. Call it slightly protective since I have had a roll in each one. I hope to continue to have a hand in future events as well. I cannot think of a more worthy cause or organization to donate my time too. I am proud to support CanPKU and all it does for our PKU Community.
We are truly blessed to have such a wonderful group of people looking after our best interests and our future. They passion that pours from each member of CanPKU is inspiring. They love what they do and they care about the PKU community. It really shows in the long hours and all the work they do behind the scenes. There is so much that goes on that is not noticed or acknowledged. I wanted to take the time to write about CanPKU as a thank you and in recognition of the hard work they do for us. Lobbying to the government for universal treatment, and working with each province, hosting events, educating the community , the medical professionals and the government. traveling to other events, and sponsoring events, fundraising, petitions and more.
For the past few years my roll has continued to evolve in CanPKU and I have had the pleasure of being on the advocacy team, working for coverage of low protein foods and KUVAN. I went to the legislator in Victoria With CanPKU, sat in parliament and spoke to MLA;s about my life with PKU and how it effects me. I have been in the news, on the radio, in the newspaper, and I have met and spoken with MLA’s , government officials and even the health minister. I have lobbied and educated everyone that I can. I am even collecting petition signatures to deliver to our health minister.
CanPKU had educated me to be the advocate that I am, keeping me up to date , informed and providing access to trained professionals to support my advocacy. They have also kept me very informed on reasearch, latest news, events, products and going ons in the PKU Community. I sometimes have more information than my clinic and end up passing it along to them.
Since working with CanPKU I feel like many doors have opened for me, I feel like I have grown as a person , taking on a more active roll has motivated me to also look after myself. It keeps me on track with my levels and diet. Not to mention, the privileges and the honors bestowed on me of opportunity to meet the incredible people that I have had the pleasure of meeting along the way. From various contributes, low protein companies, doctors, dietitians and PKU hero’s like Dr. Louis Woolf. One of my most favorite memories I have made in this journey is after an event the volunteers and CanPKU going out for dinner. Cole and I went with John , we picked up Dr. Woolf and I got to sit beside him at dinner and talk with him!!!!
I just love any chance I get to sit down and listen to John or Nicole talk about PKU. They are such a wealth of information , sometimes I feel like I need to take notes. I enjoy the monthly phone conferences, the exchange of information and the chance to hear what each advocate has been up to. Or the latest progress.
If there is anything more of me that I can give I am happy to do so. It is my wish to be involved with CanPKU for years to come. I hope to never miss an event or an opportunity. I look forward to the educational seminars and socials every year. I hope attend them for as long as I can and as often as I can. I hope one day to travel to other provinces and attend events there. to meet the people that I talk to online across Canada. Of course, only if cole comes with me though.
I am excited to see where CanPKU goes next and have my hopes and my dreams resting on that our advocacy campaign is a success and we get the coverage here in BC that we need. Even if and when we do, our work will never be done! PKU is dynamic and ever changing.
I encourage all PKU Canadians to join CanPKU, become a member and experience the informative events, get connected with PKU families in your area, receive the newsletter, join the advocacy team and take advantage of member benefits like travel scholarships to events, discount rates on events, Low protein Chocolate Easter bunnies at Easter and low protein chocolate advent calenders at Christmas. For all that CanPKU does, the membership rates are low and very much worth it. They are also annual. You can find the membership information online at http://www.canpku.org
CanPKU is not a charity, they are a non profit incorporated assocation, dedicating to supporting people with PKU and other allied disorders. They rely on fundraising and donations to keep doing the work that they do for us. So Please also consider donating to CanPKU via the website, the Pennies for PKU penny drive, The October Cut-a-thon or by purchasing merchandise. You can also join them on facebook and follow them on twitter!
In the nursing Community we have our union, and our nursing association such as the LPNABC then we hold a license through our governing body the college of LPNS. Well in the PKU Community, Our clinics are comparable to the governing body, and CanPKU is the patients, family and friends association! I am a proud supporter of CanPKU and hope you will be too!
I am PKU Strong 