As someone who has never been on "The Hill" before, it was a really exciting and eye opening day. I was asked a few weeks ago, as a participant of Answering TTP Foundation's Patient Advisory Board (PAB) to attend the conference and Action day.When I first learned that I would be given the opportunity to attend Action Day I was a little nervous and intimidated as I have never been to Parliament Hill before let alone to meet and speak with politicians in their offices. Luckily, CORD partnered me up with a team of individuals who were experienced in these kinds of meetings, consisting of a patient living with a rare disorder, the parent of a patient with a rare disorder and another rare disorder organization staffer, all of whom were willing to take me under their wings and show me the ropes!
|Taryn, Ken Chan, Carolyn Bennet, Jacqui Bowick-Sandor |
& Kirsten Harkins (From left to right)
We had about half an hour between the end of our first and the beginning of our second meeting, giving us just enough time to get to the next building and through security with a few quick photos on The Hill in between.
|Jacqui, Kirsten, Taryn, Andrew Saxton, & Ken|
|Kirsten, Ken, Tyrone Benskin, Taryn & Jacqui|
Our third meeting was with Tyrone Benskin, the MP of Jeanne-Le Ber, Qc. We arrived at his office just as he was getting back from the house and he and his staff too were very welcoming. By this meeting I was feeling confident, energized and empowered. My team even encouraged me to take the reins and lead the meeting! The meeting went great and I felt even more energized walking out of the meeting then I had going in ... if that is possible.
|Kirsten, Jacqui, Lois Brown & Taryn|
After a break for some lunch and a presentation we were off to our fourth and final meeting of the day with Lois Brown, the MP of Newmarket and Aurora. Mrs. Brown also happens to be my MP and we quickly realized that we had a lot in common, including being graduates of the same High School, go figure! Like all the meetings before our fourth meeting went amazing!
All in all I think the day on The Hill was a success! I got to see Parliament inside and out (ps. the buildings are stunning!), I got to meeting with some friendly politicians, but most of all I was able to generate awareness of TTP and the need for support in gazetting the Canadian Orphan Drug Regulatory Framework.
To learn more about the Canadian Orphan Drug Regulatory Framework and/or to sign the petition, Click Here.
Next year we hope more of the Foundation's active volunteers can attend. To find out more about joining the Foundation's Patient Advisory Board visit our website HERE.
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