Friday, February 19, 2016

Queen's Park Feb. 18, 2016

So I have been hinting and shushing and planning for yesterdays event in the big Smoke, and now I can finally tell all about it! 

I was invited by Save Your Skin Foundation to tell my story at the reception they hosted for the Legislative Assembly of Ontario, at Queen's Park, Toronto.  They were presenting to government officials and representatives from several pharmaceutical companies on the current landscape of melanoma in Canada, and yesterday specifically, Ontario.

http://www.saveyourskin.ca/news/media-advisory-ontario-parliamentary-assistant-to-the-minister-of-health-and-long-term-care-indira-naidoo-harris-expected-to-attend-reception-on-melanoma-in-canada/

Claire and Cass and I buzzed down yesterday afternoon in time for the evening cocktail reception, showed our ID to the very serious "Special Agent Constable" to be admitted to the building, and met a whole bunch of interesting and caring people from Toronto and all over.  

At the top of the highlights list for me personally was meeting Kathleen Barnard, the Founder of Save Your Skin Foundation, Vancouver.  


A tiny lady with a huge personality who came into the room like a ray of sunshine and immediately skipped my offer of a shy handshake for a big hug instead.  I was instantly at ease, I saw plainly why I have felt such a draw to this group, and I remain in awe of her incredible energy.  

We exchanged stories of metastatic malignant melanoma treatments and I was humbled by her account of horrible medications with side-effects that dwarfed my experience with ipilimumab.  She was actually one of the first in Canada to receive ipi circa ten years ago... and she had to travel to the U.S. to get it!  Melanoma treatment has come a long way, with strides especially in the last year.  

That was one of the main reasons for this reception.  As detailed from the SYSF site (and I have more photos below this):


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Media Advisory: Ontario Parliamentary Assistant to the Minister of Health and Long-Term Care Indira Naidoo-Harris to Attend Reception on Melanoma in Canada
The Save Your Skin Foundation Thanks 
Ontario Government Leaders for Ongoing Collaborative Efforts to Put Patient’s First
  
Toronto, ON – (February 18, 2016) – The Save Your Skin Foundation thanks Ontario Health Minister Dr. Eric Hoskins and the Ontario Government for putting patients first. 

The Save Your Skin Foundation will hold a reception this week, where they will meet with PA Naidoo-Harris and other Ontario government leaders to discuss the current landscape of melanoma in Canada, and what this means for Ontario patients. 
In 2016, Save Your Skin Foundation is raising awareness, improving patient care and expanding education about skin cancer (melanoma and carcinoma) through three key initiatives:
  1. Conversations with Government: Throughout the year, SYSF will hold meetings with provincial government leaders to discuss provincially consistent healthcare and the importance of equal timely access to new treatments for all patients
  2. Spotlight on Skin Cancer Webinar Series: The new 2016 series of medical and patient webinars are aimed at addressing key issues and questions in the area of skin cancer from both the patient and medical perspective. More information and registration details can be found here: http://www.saveyourskin.ca/support-resources/webinars-and-video-resources/
  3. Multidisciplinary Roundtable Meetings: SYSF is committed to bringing patients, doctors, healthcare professionals and industry together to identify gaps in cancer healthcare and to collaboratively find solutions
For further information, please visit www.saveyourskin.ca.
About Skin Cancer in Canada
Skin cancer is the most common cancer in Canada, with over 80,000 cases expected to be diagnosed this year alone, more than 5,000 of which are melanomas, the deadliest form of skin cancer.
In its late stages, the average life expectancy for melanoma is just six months, with a one-year survival rate of only 25 percent, making metastatic melanoma one of the most aggressive forms of cancer and one of the deadliest forms of skin cancer.
About the Save Your Skin Foundation
The Save Your Skin Foundation is a national not-for profit organization dedicated to the areas of skin cancer and skin disease with a focus on education and awareness, supporting research and ensuring equal and timely access to treatment for all Canadians. Please visit www.saveyourskin.ca for more information.
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The girls and I were honoured to meet Dr. Eric Hoskins, MPP for the Toronto riding of St. Paul’s, now appointed Minister of Health and Long-Term Care.  We had a frank conversation about my experience with melanoma and he wished the best for my future.  He also suffered a little grilling from Claire about twin facts, she made him guess which of the two girls is oldest (by 21 minutes!).  Out of the mouths of babes as they say... nothing as refreshing at a government event as a pair of worldly 13-year old identical twins charming the crowd with their honest perspective!

Another honour was being joined by our very own Bill Walker, MPP Bruce-Grey-Owen Sound.  I was thrilled that he delayed his return to Owen Sound long enough to attend this event upon my personal invitation.  He is obviously an experienced representative, and also helped me to feel comfortable with some of the details I may have otherwise missed about being in Queen's Park and meeting some of the folks we did.
   
https://twitter.com/billwalkermpp?lang=en

Mr. Walker was also very kind to offer the girls and I a tour of the Legislative Building should we wish to return, and he even said I could borrow his parking spot if I was there for future events.  Thank you Bill Walker, for joining us last evening, it meant a lot to my family and I, and to SYSF. 

The lovely Dr. Cheema spoke to the medical details of melanoma treatment as it is in Toronto (and Ontario) today.  She gave a heart-wrenching account of the limitations of treatments available, and I was honoured to speak after her, putting into laymans terms my small part of the experience she spoke of.  She is a close colleague of my medical oncologist at Odette Cancer Centre, Sunnybrook Health Sciences Centre.  The girls quite enjoyed hanging out with her husband as well, a highlight of the evening for them for sure.

I'm sure I will have more photos and notes to add in the coming days, but for now I will conclude with these.  


 





And I quote: 
"OMG MOM you're on a billboard!?!" ---->


I would like to thank Kathy and her lovely staff from SYSF for inviting us, connecting us, treating us like royalty, and giving me a chance to share my story.  
Thank you for welcoming my family and I, thank you for the flowers, and thank you for allowing me the opportunity to say I had my glass of wine for National Wine Day in the heart of our provincial capital!   :-)   You are a classy bunch.  
Until we meet again, I look forward to it.  

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