Dearest Friends and Lucky Lucy and Yianni Supporters,
Once again I intend to ride my my bike through uncomfortable terrain and distance in support of Cystic Fibrosis Canada. On June 22-23 myself and a team of riders that includes my friend Aaron Mittler, will ride for Yianni and Aaron’s daughter Lucy. We will be cycling from Whiterock through Hope and up to Manning Park (approx 250 km).
CF Canada, and other organizations like it, have done amazing work in advocacy and research. My family is very thankful for this work as it affects our everyday with our son Yianni. Last year our family learned that our son Yianni has Cystic Fibrosis. As you can imagine this was not easy to process and then accept. The CF team at Children’s hospital has ensured that Yianni has access to a proactive medical plan that keeps him strong and healthy. We are so thankful and have every reason to believe that with family support, medication, physio and some extra check ups, Yianni will continue to thrive at every stage of life.
Cystic Fibrosis is the most common fatal genetic disease in North America – BUT - is one of the most positively impacted by research. In the ‘50s kids with CF would not live to see kindergarten. Medical breakthroughs driven by scientific research have greatly improved the outcomes – and it’s now common for folks to live into their 50s and beyond (!!). However, there is MUCH work to be done and not only on the research front. Advocacy is a huge part of the mandate and we are presently occupied with providing access to life saving drugs such as Orkambi – which are approved by Health Canada but not yet funded and out of reach for many due to costs in excess of 200k / year.
For those that have met Yianni you will know that he has been blessed with many gifts. His easy going personality, ability to connect with people and ability problem solve seem to be distinct strengths. We are so excited for both Yianni and Stefan to go out and experience the world.
As a family, a low stress approach to what was the worst news possible in December 2017, has been possible because of advocacy and scientific/medical breakthroughs that work. This advocacy by families and CF organizations has led to early screening for infants and access to drugs and supplements that our son is the beneficiary of. With continued advocacy Yianni is a few small steps from drugs that can provide a cure.
My family and I are forever thankful for all your support.
Yianni, Stefan, Dayna and Nick.
Please consider making a donation at the link below – no amount is too small!
This year we have an ambitious goal of raising $100,000k as a team(!!!)