It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here.
Patient Advocate | Cystic Fibrosis
- Volunteer with Canadian Cystic Fibrosis Foundation
- From Newton, Ontario, Canada
- Contact info: Email | Twitter | Website
- Cystic Fibrosis affects approximately 70,000 people worldwide
- Passionate about: Legislative Policy
Why did you become an advocate for your rare disease community? What was happening in that community that made you want to take action?
Started to help raise money and awareness for a cure. When a medication was approved and not covered for my rare form of CF. I needed to fight for myself and the others who were dying without it.
What was your first success or defining moment as a rare disease advocate?
When after a long battle and many trips to Queens Park and many interviews the drug was covered for those of us that needed it.
Share some of your biggest accomplishments as a rare advocate?
Helping petition for new born screening first CF and getting Kalydeco covered.
Share some of the hard realities you faced advocating for your rare disease.
I learned that you can’t take no for an answer. I just kept going back and explaining why they needed to cover this drug. I found being positive help a lot.
What project(s) are you working on now for your community?
I continue to work with CF Canada to raise awareness. I also work with We are More. I try to promote a positive perspective on living with chronic illness. It is important to me to have other youths feel empowered and not less because of their illness.
What advice would you give to an advocate just starting out?
I believe that it is very important to maintain a strong yet positive position. I think that by behaving in a dignified manner without a lot of “drama” and over the top antics you will garner more support and respect. I always was polite and respectful despite the outcomes of some of the meetings. I made every effort to attend every interview whether televised or print.
Why do you find working with advocates from different disease groups beneficial?
It is great to learn from others with different challenges. It is also great to see what works and what doesn’t. Having people with similar focus despite the different illnesses is inspiring.