Roadshow: Winnipeg, Manitoba

Sydney Interviewed by CityTV

February 28, 2011 has marked, not only the globally recognized 4th Rare Diseases Day organized by EURORDIS, but also the start of the western leg of the Answering TTP Roadshow. We have connected with a local TTP doctor, an Apheresis nurse, two TTP patients and the media. CityTV had a feature story on Tuesday's Winnipeg Breakfast Television show featuring TTP, click here to view it.

 

CityTV Reporter Kaleigh Hamilton with Lisa her mom.

Lisa Interviewed by CityTV

I met with Dr. Moltzan, a doctor treating TTP patients at Saint Boniface Hospital, and Brenda, an Apheresis Nurse, to introduce them to our patient organization. I am thrilled that they will be passing out the new TTP patient brochure. This brochure is an educational resource for patients and supporters. It is available to all TTP treatment centres for them to distribute to patients. Moreover, the brochure contains information about our patient group and how patients and supporters can reach out to us.  We look forward to the response from these brochures to help initiate local patient support activities.

Chris & Lisa

Canadian Blood Services helped to organize a media event with myself, a local TTP patient and Bill Coleman, Director of Donor  and Clinic Services for the Prairies. We were successful in attracting attention from local CTV and CityTV television stations. Check out CityTV's coverage by clicking here. Lisa Nield is a local TTP patient who has shared her story nationally to raise awareness for the need for blood donors. Her calm positive confidence in front of the cameras was inspiring. I can definitely learn a lot from her. She, like many of us TTP patients, has a frightening story to tell and she has agreed to share it first hand with us on the Answering TTP website, so stay tuned. Her story is that of courage and hope. It took over 700 blood donations for her to obtain remission.  Ten years later she is a bright eyed mother to be. Her and her husband, Chris Mcivor, continue to give back by raising awareness regarding the need for blood and thanking those selfless strangers who do.

CBS starts their Sirens for Life initiative in Winnipeg tomorrow for the month of March. It is a fun and competitive competition between the Winnipeg Fire Paramedic Service and the Winnipeg Police Service. The challenge is in its sixth year and has a goal of obtaining 125 donations; up from the actual 117 obtained last year. Good luck to all participants!

Sydney & Karen Black

After a quick meal of rice paper rolls at a local Vietnamese restaurant, YUM!, we were off for my radio debut. I admit I was nervous. My chest would pound when I even raised my hand during a class at school. Now I was going to be on live radio! CJOB is the local number one  station in Winnipeg and Karen Black asked me on her show, The Drive with Karen Black. Walking into the studio my nerves, not the -15oC weather, shook my body. But Karen’s fun and laid back demeanor had me feeling myself again relatively quickly. She even introduced me to a fellow TTP patient who works at their studio. After the CJOB interview, we were off to CBC Radio for another live interview with Larry Updike. During both interviews I was able to explain TTP, raise awareness for the need for blood and personalize the disorder by sharing snippets of my story.

It was a great visit to Winnipeg. I could not have done it all without the help of my Aunty Janis. She kept me calm, well fed and on schedule. Moreover, Adrienne Silver from Canadian Blood Services was instrumental in organizing the media initiatives. Thank you to everybody who helped make today possible. I feel very lucky and energized for my 7am flight to Saskatoon tomorrow!  Goodnight.