Hi! I am Madi Vanstone and I was diagnosed with Cystic Fibrosis (CF) at 8 months old. CF is a Genetic Terminal disease that affects the Lungs, Digestive System, Pancreas, Bones, and Heart. Death in CF patients is most often caused by Lung complications, and as of right now the only way to prevent this issue is lung transplant.
Despite my personal battles I do my best to improve the lives of other patients. I began raising awareness and funds for CF research at 1 year old. At 11 I started to get involved in advocacy. I fought the Ontario government for coverage to a much needed “miracle” medication that was saving my life (at the cost of $350,000 a year). My fight was successful in 2014 when Ivacaftor (Kalydeco) was added to not only the provincial healthcare plan, but also across Canada. I began working as a Canadian healthcare advocate in late 2014. In September 2015 I flew to California to accept an award where I met Shira Strongin as well as many other Patient Advocates. I am involved with CF Canada, and many other organizations to make a difference in the rare disease community.
I am now known internationally (SO COOL) for my efforts to evoke and encourage positive changes in the rare community.
The miracle medication I am on only works for 3% of the CF population, and that is why we are raising funds to help advance CF research to find a cure and save my many CF friends from this violent, progressive, terrible disease. I will not stop fighting until a cure is found. I wouldn't wish this battle on anyone.
On May 28th I will be walking to raise funds and awareness for Cystic Fibrosis for the 15th time. You can read more about the walk and/or sponsor me by clicking on this link.
Your donation will go towards research to find a cure for Cystic Fibrosis.
CF might slow me down, but it will never stop me from doing what I love, advocacy.
Madi Vanstone is a 15 year old model and rare disease advocate from Ontario, Canada. You can follow her on Instagram at @madi.vanstone. You can learn more about Cystic Fibrosis here.