Blogging @ GetSkinHelp.com

Over the last couple of years I have had the pleasure of doing some work with the GetSkinHelp team, and I’m pleased to continue! Wrote a blog for them – click here to read:

What to Expect at the Dermatologist

GetSkinHelp is leading the charge when it comes to digitizing the complete patient circle-of-care.

Not only are they providing quality virtual services across Canada, but they are collaborating with government agencies and hospitals to bring their technology and services to more people.

GetSkinHelp found its footing amid the Spring 2020 lockdown, when Dr. Colin Hong saw a surge in people coming in for skin cancer. Teaming up with entrepreneur, Keith Loo, the two began planning how to help patients right from their own homes. From there, what started simply as an online skin cancer screening tool, has quickly amassed to become a company that covers a variety of skin conditions.

They are also working to demystify the Canadian healthcare sector, particularly as it relates to dermatology, chronic skin conditions, and skin cancers. They investigate how drugs are developed, how AI will affect healthcare, and the forces at play in society that affect our wellbeing.

Some of the challenging questions they investigate include:

Why are there so few Dermatologists in Canada?

And

How much do you think it costs to remove a melanoma?

I'm fascinated to learn the answers to these questions - much of it is news even to me!  So thanks for your great work GetSkinHelp, I look forward to continuing to support your initiatives.

To learn all about how the GetSkinHelp app works click here to go to their website.  They also have their informative discussions and interviews on their youTube channel, and their podcasts are on Spotify and iTunes

Recent Media - it's still a family affair

For years Claire and Cass were by my side for awareness events and opportunities when we would share our story about how I was diagnosed with metastatic melanoma, and how it went from there for our family. Especially with Save Your Skin, we did many video and print advocacy pieces, often making the trip from Meaford to Toronto to meet with journalists and crews, SYSF staff, the La Roche-Posay team - anyone who would listen, really! - to raise the profile of skin cancer and the importance of early detection. The three of us were a melanoma-awareness-posse! And we had some great media hits in addition to my guest blogging for HuffPost, Her Magazine, Yahoo Canada, and others.

Claire and I on CTV News - Melanoma Monday, May 2016

In recent years the girls have taken a well-deserved break from that scene, and I placed all of my own advocacy and media attention under the Save Your Skin banner. 

Well... fast forward to the last two days - and Cass is now on CTV News as well! I've woken up at balls a.m. (stay tuned for more on my move from the centre of the universe Eastern Standard Time to Beautiful British Columbia Pacific Time LOL) to hold interviews with a couple of lovely media providers in Ontario to speak about the Sty-Lives (Styling Hair & Saving Lives) program.  And Cass, recently graduated from Marca College of Hair and Esthetics and now working at a swanky salon in downtown Toronto, jumped on board to help share the message. 

Early Monday morning we bravely prepared for a zoom interview together with two Physicians on CTV News Sudbury, and I'm proud to say Cass nailed it! She has a very firm grip on how to be successful in her chosen vocation and she works toward that goal every day, while maintaining her beliefs and bringing her personal experience to the job as well. Cass is an advisor on the Sty-Lives initiative, helping us shape it to be relevant to the Hair Professionals perspective. Of course she is also passionate about the program as it brings full circle our family's desire to increase melanoma skin cancer awareness. 

Enough of my talking about it - how about I just show you the interview recording!  :-)  Click here to watch:

The written article is also located at this link, though the video at the top hasn't yet been updated to our interview (at the time of this blog posting). An excerpt:

Toronto hairstylist Cassandra Richardson joined the initiative for a very personal reason, her mom is a skin cancer survivor. Richardson said she’s ready to help anyone who sits in her chair.

"I’m very passionate about prevention and early detection so this really means a lot to me in the fact that you can absolutely change someone’s life by simply doing your job," she said.

"It’s so easy with the instructional video that Miranda sent. Like it’s so easy to tell someone that 'you have a spot on your head, you should get checked out.' It doesn’t have to involve anything  more than that. Just that simple step of telling that person that it exists is just one step closer to saving their life."

Adding, "It’s just so easy. There’s just no excuse not to do it as a hairstylist."

Atta girl Cass!  #ProudMomma

In addition to the above coverage, Global News Radio 640 Toronto picked up the story on Tuesday, and I had the privilege of speaking with Kelly Cutrara about Sty-Lives and skin cancer detection. Check it out here:

The recent story of hockey fan and medical student Nadia Popovichi who alerted a Vancouver Canucks equipment manager about a cancerous mole she spotted on his neck while at a game has gone viral and is helping to highlight the importance of early detection.

I'd like to say thanks to these media networks for sharing news of the Sty-Lives program, and I am happy to report that registration from hair salons across the country is growing very rapidly!  I'll keep you updated on the progress, and in the meantime please feel free to share this link and video with your Hairstylist or Barber:   

https://saveyourskin.ca/sty-lives/

Thank You!

My work at SYSF, explained

A few years ago I posted about finding this group called Save Your Skin Foundation (SYSF), founded by BC-based melanoma survivor Kathy Barnard, and all about how Kathy and the SYSF team helped me through my cancer experience.  (Click here for a quick re-cap: "Queen's Park Yesterday")

Since that time I volunteer-blogged for SYSF, and was a Spokeperson for them at Ontario events and then nationally, until I felt well enough to go back to work, knowing I needed to do something meaningful with my career and help others the way SYSF had helped me. I badgered Kathy into hiring me part-time as a Project Coordinator, and off we went! 

I tested the employment waters for about eight months, got my legs back under me, and then moved into a full-on Director role in which I have been working for the past five years. As you know, that didn't leave me much time to write on my blog - but it's okay - I was able to pour all of my creativity and combined professional skills into my work at Save Your Skin, and I love it. Love working in this field, though stressful at times, I am proud of what we do, and I endlessly appreciate my mentor and friend, Kathy.  

Recently we were both interviewed for a joint article for AIM at Melanoma in the States, and this write-up took me right back to how I felt about Kathy and SYSF six years ago, and it is still how I feel today:

From Survivors to Advocates: Two Leaders are Pushing for Progress in Canada and Around the World

It is true that the Oncologists on our team joke with Kathy and I about how they help save melanoma patients and then Kathy hires them.  Kathy saved me - then she saved my career, and then she saved my love life LOL!  (More on that later - as I mentioned, Mike is a melanoma survivor and he has long been a Spokesperson for SYSF, and that is how we first met and became friends years ago. 😊 )

Many of my family and friends have asked me over the years "what IS your job?" 

I can explain. It is oncology patient support and advocacy across Canada. Helping patients like myself navigate the health care system, figure out - and access! - treatments, support them through the emotional and sometimes financial hardships of a skin cancer diagnosis, inform them about their disease and options, and simply in general BE there for them.

In the last five years, along with the Team and Board and Medical Advisory Board at Save Your Skin, I have supported the Foundation's work by:

• facilitating 14 educational webinars on melanoma, non-melanoma skin cancers, and ocular melanoma 
• hosting two fund raising Galas in Toronto, and one virtual one (since covid)
• attending the Canadian Melanoma Conference in Banff three times
• traveling around the world to attend conferences such as the Society for Melanoma Research Congress, European Post-ASCO Melanoma/Skin Cancer Meeting, CureOM Science Meetings and Patient Symposiums, Society for Immunotherapy of Cancer, European Society of Medical Oncology, and many more - next post is all about these! (Travel to all the conferences helps us learn all the latest news in skin cancer and advocate for the best treatments to come to Canada)
• representing SYSF and working with many Canadian and international groups to endorse and support work in the field of melanoma skin cancer research and support, including being on the cover of the newest National Comprehensive Cancer Network® (NCCN®) Patient Guide for Melanoma. True story:

• writing content and guiding awareness and support initiatives in all aspects for the SYSF community across Canada - annual Melanoma Awareness Month, Cancer Survivor Day, press releases, city proclamations, media opportunities, development and publishing of video productions, educational materials, blogs, newsletters, countless patient/caregiver meetings and roundtables, the list goes on...

Below are a bunch of photos of my work in the last five years.  

To kick those off I want to show you our newest video - among other items, most recently we launched a project about which I am very proud and excited: Sty-Lives - Styling Hair and Saving Lives.  (You may or may not know my Cass is a Hairstyling Apprentice, graduated from Marca College in Toronto, so she was a contributor on this project.)

Sty-Lives is being rolled out across the country by a team of Medical Student volunteers, plus our SYSF staff and supporters, to hair salons and barbershops for the education of hair professionals to help detect suspicious spots on clients' heads/ears/necks, encouraging them to seek an appointment with a Dermatologist for professional examination. All salons are eligible to register for this free program, so if you'd like more information or for me to mail you some materials for your salon, email me or let us know, here:

https://saveyourskin.ca/sty-lives/

And here is the video:

***

Collection of photos  - just some of the many friends I have made and experiences I've had along the way.  Enjoy!  

Giving Hope Gala

<--- oh and there's Mike! :-)

Move for Melanoma Annual Event

Global Coalition - Melanoma Research Foundation, U.S.

           ( and you might recognize this guy... --->  )

Conferences and Roundtables

MI-PAC - AIM at Melanoma, U.S.

And some random shots from over the years at the Cdn. Melanoma Conference at the Banff Springs Hotel:

And a random selection of our materials:

Thank you Save Your Skin Foundation, I love you! 

Save Your Skin Foundation (SYSF) is a patient-led organization dedicated to the fight against non-melanoma skin cancers, melanoma, and ocular melanoma through education, advocacy, and awareness initiatives across Canada. SYSF provides a community of oncology patient and caregiver support throughout the entire continuum of care, from prevention and diagnosis to survivorship.

When things come full circle: OneWalk, Toronto

I'm having one of those days where everything seems ironic. In a good way.  This afternoon I am being interviewed for an article in the National Post, for a project that I have been working on behalf of Save Your Skin Foundation since last year.  We are working with the folks at Post Media to do a Spotlight on Immuno-oncology in the Patient Diaries series. 

Save Your Skin advocates for cancer patient access to life-saving immunotherapy treatments, and is helping to bring patients and the media together to shed light on this subject.  Patient Diaries is spotlighting some patient stories for the feature to run this Fall, so I shouldn't have been surprised when I got the call the other day asking if I would be willing to share my story for it.  Guess I kinda forgot I still am a melanoma patient (who received immunotherapy) - have been so busy living and working it didn't occur to me that they would want my story in there. LOL It will be neat to see this Spotlight come together from both sides, as a project manager from the inside, and as a patient interview on the outside.  Stay tuned for more info!

Another full-circle event is upcoming for me too - the OneWalk in downtown Toronto September 8, 2018.  Two years ago my dear friend Rhonda walked in my honour the fund raiser for melanoma research at Princess Margaret Cancer Centre, when there was no way I could have walked that distance.  Just finishing my treatments at the time, I was struggling with side effects and a difficult emotional cancer battle, and I was incredibly moved that she did that for me.  

That's Rhonda :-) -->

Now I am feeling much better, and I have been invited to walk 15km downtown Toronto with a team that has been part of my life for several years. You may remember me talking about La Roche-Posay, the sunscreen and skin care brand who created the "Become A Skin Checker" campaign and invited me to share my story at their Toronto awareness events. 

This year La Roche-Posay graciously accepted my request to become an official sponsor of Save Your Skin Foundation, and they donated a whole bunch of their excellent sunscreen to us for distribution at our events.  We are building further on the relationship by my joining their OneWalk team this year, to raise money for melanoma research at Princess Margaret (at which Save Your Skin closely works with melanoma oncologists on a regular basis).  

In September La Roche-Posay Canada and I will join forces again, this time to raise $15,000 for melanoma research.  A very exciting prospect!!  Being as I have the honour of working directly with lead melanoma researchers at Princess Margaret, I can assure you personally that the funds go directly where they are supposed to go.  I fully support this endeavour, and I hope you will too.  

To donate to our team, please click here: 

OneWalk.ca/goto/Natalie_Richardson

Thank you! 

More about La Roche-Posay at OneWalk Toronto 2018:

La Roche-Posay is a skincare brand committed to preventing and fighting skin cancer. Recent studies indicate that of cancers diagnosed worldwide are a form of skin cancer, which is why our mission to provide a better life for sensitive skin is more than ever. Developed in collaborating with dermatologists and toxicologists, our products contain only the necessary ingredients, at the right active dose.

To further contribute to the cause, we introduced an annual public service campaign in 2017 with the mission to inform the public about the dangers of sun exposure and the importance of protecting your skin from UV rays. This year, we are taking our commitment one-step further. La Roche-Posay is proud to be an official partner for this year’s OneWalk to Conquer Cancer™, one of Canada’s life-changing cancer fundraising experiences. Every year, thousands of walkers unite to take the streets of Toronto and challenge themselves to walk and raise vital funds for cancer research and care at the Princess Margaret Cancer Centre. 

This year, La Roche-Posay will be walking 15 kilometers and raising $15,000, which will go directly towards melanoma research. These funds will go directly toward supporting the Princess Margaret Hospital’s world-leading clinicians and researchers to detect cancers earlier, diagnose with more precision, target treatment for each patient and support patients and their families throughout the cancer journey.

Queen's Park 2.0

Again this week I had the opportunity to visit Queen's Park, a little more than two years since the first time the girls and I were invited by Save Your Skin Foundation to attend a reception and presentation on the landscape of melanoma treatment in Canada. 

In fact I was there twice this week, once to meet with our very own Bruce-Grey-Owen Sound MPP Bill Walker, and a second time to attend a breakfast event to inform on the topic of immuno-oncology in cancer treatment.  One of the big parts of my cancer story is that I was lucky enough to receive immunotherapy treatments in the adjuvant setting, following my stage IIIb nodular melanoma diagnosis in April 2014.  I am a special snowflake in this regard, as I received it by clinical trial, when it wasn't (and still isn't) available in Ontario - or Canada.  It quite possibly saved my life; with each month that passes I celebrate that I am getting that much more time than I was first given when diagnosed.  

Anyway, in the name of sharing the importance of a story like mine in order to to give hope to others, and to advocate for better access to these life-saving treatments, I was invited this week to represent Save Your Skin at the "Queen's Park Advocacy Days" in Toronto.  This event was coordinated and hosted by Canadian Cancer Survivor Network (CCSN), and included a series of advocacy meetings with MPPs and other provincial government advisors and representatives, to discuss the importance of timely access to the cancer treatments that Ontario patients need.  

CCSN is a patient organization based in Ottawa, which works on behalf of all cancer indications, recognizing the value of immunotherapy treatments in various types of cancer such as lung cancer, some types of lymphoma and myeloma, and even bladder cancer.  Melanoma is the poster child for research in immunotherapy, as it was among the first to respond to this type of treatment, one that uses the body's own immune system to fight cancer cells.  

CCSN President Jackie Manthorne delivered heart-warming opening remarks at the breakfast event, and then we heard from an Ottawa-based Oncologist as to how immunotherapy works and what benefit it holds for treatment of lung cancer, as well as Sudbury MPP France Gélinas who commented on the need for improvement in the Ontario healthcare system, and the importance of the patient voice in our drug approval process across Canada. 

It was my first time seeing Jackie speak, since I first "met" CCSN online in 2016, and she did a great job of addressing the patient advocates in the room, as well as the government folks who took the time to attend the event.  Any opportunity to connect patients with decision-makers is a great one.  I was pleased to represent Save Your Skin Foundation as a friend of CCSN, and enjoyed seeing my colleagues from fellow patient groups such as Lung Cancer Canada, Myeloma Canada, and Lymphoma Canada.  We often work together in this field and join voices at events such as these.  

Another group we have crossed paths with in the past is Bladder Cancer Canada, and I had the pleasure of chatting with one of their representatives this week at both meetings.  Bladder cancer survivor and incoming Chair of their Board Ferg Devins, a communications strategist in Toronto, was my advocate-buddy in meeting with Bill Walker, and an experienced navigator of the many hallways and entrances/exits of the "pink palace" that is the Queen's Park main building.  We had a productive discussion about cancer care in Ontario with Bill, and I expect we will collaborate again in future. Shout-out to Ferg - and thanks to Bill Walker for generously offering for us to use his parking spot yesterday! (super huge help for this non-city girl trying to find a parking spot anywhere in downtown Toronto agh! - and a nice bonus for those of us who wear stylish high heels to meetings ;-) 

I also had the honour of bringing my daughter Cass with me, so she saw first-hand what I work on in my job every day.  She was pleased to realize she understood what everyone was talking about, and she even had a nice conversation with a curious MPP who asked her what it was like being the caregiver of a cancer patient who received "this immunotherapy stuff."  

She had expressed some nervousness on the way to the event, worried that she might not know what to say if anyone asked her a question, but I assured her she would be great, as she has first-hand experience with the topic at hand... and sure enough she was a fantastic spokesperson!  And who knows, she may have touched a nerve with the gentleman she spoke to, and he may have left the meeting with just that little bit more insight into the reason for the event and the need for government to understand and work to improve. 


After the immunotherapy information session we were invited to attend Question Period!  Thanks to CCSN and to Bill Walker MPP, Cass and I, along with my colleague Louise Binder, Health Policy Consultant (Toronto) with Save Your Skin, were introduced in the Legislative Assembly of Ontario.  It was awesome to hear our names and that of Save Your Skin Foundation go on record in Ontario, an experience I was happy to relay to my boss and friend Kathy Barnard, President & Founder of this Vancouver-based group. Save Your Skin Foundation is a national not-for-profit patient organization, and we were all thrilled to be recognized in Ontario.  We support patients across the country, and have many friends in Ontario, so it was a sweet moment to make it official.

Was interesting to witness Question Period too, especially the day after the budget dropped - woo hoo lots of clapping and table-banging theatrics between party representatives! You can view archives of the Question Period HERE. Of course we couldn't take any photos inside the chambers, but at that link you can see what we saw.  Cass and I concur it was worth leaving Meaford at 4am to travel to!   
I also got a look at the new Minister of Health and Long-Term Care for Ontario, so I can picture who I will be addressing in an upcoming letter about melanoma patients' needs in immunotherapy treatment.  :-) 


A few more pics from the day, enjoy...

 

Queen's Park, Toronto, Ontario, Canada

Oh and as we were walking around the outside of the building too, and I was oooh-ing and ahhh-ing about the architecture and lamenting the history of this building, Cass sweetly breezed past me unconcerned, and with a flip of her hand said "MOM... please remember I just travelled to EUROPE!"  LMAO - point made.  This is not Gaudi.  But I do appreciate the history of our local capital.  Huff.  ;-)


PS - the kid did have a great trip to Italy and Spain, we all survived. LOL  I am proud of her for putting herself far outside her comfort zone and achieving that trip (and daily gelato tastings!)  And I am proud of her twin, for holding her own while her sister was away, and for going to school yesterday while Cass and I went to the city.  Claire - I will ask Mr. Walker for another opportunity to visit Queen's Park, so you too can see the spectacle that can be our government in action.   Love you both!

Countdown to Australia

Next month I will be attending the 9th World Congress of Melanoma in Brisbane, Australia, as the representative of Canadian patient advocacy group Save Your Skin Foundation.  This four-day congress serves as the meeting of world leaders in the field of skin cancer research, prevention, and treatment.  I will be attending sessions covering all of the latest news and topics in melanoma and other skin cancers, and I will bring this knowledge back to Canadian patients. 

In conjunction with the congress, I have the honour of sitting on a working group in the Global Coalition for Melanoma Patient Advocacy, in which we will continue the work spearheaded by Melanoma Research Foundation (MRF).  I have followed MRF since my own diagnosis, and celebrated their work from my corner so far away; namely, this year in May was the first annual World Melanoma Day.

My itinerary for the week is pretty much booked.  In addition to the main plenary sessions discussing melanoma, I have chosen sessions which speak to my personal experience and interests, as well as those of Save Your Skin, as we want more detail in the following areas:

• Advances in Merkel Cell Carcinoma (a rare but very serious form of cancer)
• Basal Cell and Squamous Cell Carcinomas, Actinic Keratosis, and if I can, Uveal Melanoma (a.k.a Ocular Melanoma)
• Surgical management of Stage III melanoma (directly relates to my scars)
• Immuno-Oncology in melanoma
• and one that I REALLY want to know about so I can put to rest the controversy - Sunscreen: Bioavailability and Toxicity (this topic was always on my mind in my tree-hugger days, and it is still a common question asked to SYSF)

My brain is going to be SO full!  I must admit, in the almost-year that I have been working for Save Your Skin, I have allowed myself to be intimidated at times, by the science and politics behind what the Foundation does, but as I buckle down and study it piece by piece, I realize I know far more than I thought.  My colleagues have been patiently teaching me, and I have been soaking up the information but now I find myself actually being able to apply the information to my own experience with melanoma, and it makes sense.  

I was there (still am, of course, my 6-month CT scans are Monday in fact) - I know what they're talking about, I have done my time at Sunnybrook and analyzed every word my medical team has told me over the years.  Now I get to learn from the best, about people just like me, and I understand. It is science - and I'm okay with that - thanks Kathy! ;-)

Aside from the conference, I am taking a day to go hug a koala.  IN AUSTRALIA!!!!!          :-) :-) :-)   #spoiledgirl #gonnawearlongsleeves

 

 **************************************

22 days remain in my countdown to Australia, and I am reflecting on how this has all happened.  Three years ago at this time I was recovering from extensive surgery, my family and friends were looking after me, I was heading into my third systemic immunotherapy treatment, and I was in a psychological tailspin.  I had no idea whether or not I would survive to see any semblance of the future I had hoped I would have, and fear overtook most of my days.  

Step by step I walked out of that place, I worked to overcome those challenges, I leaned on the supportive people in my life, and I got back out there.  And I talked about it.... blah blah blah... you already know, I talked.  Blogs, youTube, radio, TV, magazines, speaking appearances, more blogs: it gave me something constructive to do with my cancer experience.  When I realized that there were others like myself, others navigating an advanced melanoma diagnosis with the same mysterious dark cloud over their future, I wanted to share.  I wanted to reach out and help them know they were not alone, and I wanted them to tell me it would be okay too.  Which they did. And still do.

Now I have the honour of being able to help others through their skin cancer journey on a grand scale.  I will go to Australia, attend the World Congress of Melanoma, fill my brain with all the latest news from the world leaders in this field, and bring it back to Canada in the form of reports from Save Your Skin Foundation.  Not bad for a humble little patient like me... as if I'm not already grateful enough just to be alive.  

Thank you Save Your Skin Foundation, for bringing out the best in me, and for encouraging me, now that I live permanently outside my old comfort zone.  Thank you for posting my first guest blog, it all started here:

 

In response to this press release last week, I wrote below article for HuffPost: 

This article was originally called "Canadians Need to Know They May Not Get Available Cancer Treatments" but I digress....

Patient Advocacy 101

eeeek - when I first explored the "advocacy" option of my melanoma journey, it wasn't entirely intentional... and I was intimidated, to say the least.  I had to read and re-read the advice posted online and really think it through.  

I was sure I needed to have my voice heard (and my family may or may not have been tired of hearing it!!); I had to go big... just a bite at a time, but bigger.  

I had already asked as many Oncologists as I could get my hands on about my disease, and how it may affect my future, and that of my kids (who, for the record, now have the dubious distinction of a close family history of cancer. For the rest of their lives they have to answer those questions when asked about their family medical history.)

I am starting to get more comfortable with advocacy, but the most important thing I have learned about it is that any little bit I do to contribute to it is helpful.  Every little bit helps, as with everything worth working toward in life. 

Last February I spoke at the meeting Save Your Skin hosted at Queen's Park, and I was nervous.  But I spoke about what I knew.  I was sure about what message I wanted to convey to the people in the room that night, it was my story after all, my family and I had lived it.  

Following that meeting I wrote a letter to Federal Minister of Health: Hon. Dr. Jane Philpott - thankfully I had help writing that letter! (I'm a decent writer, but not the political kind) It was my story, but with the background information and format needed to support it's credibility.  

A few months later I wrote another letter, to Dr. Eric Hoskins, Minister of Health in Ontario.  And just yesterday I attended a conference at which many patient groups were represented, and I learned even more about how I can get help trying to get my needs met, as a cancer patient in Canada.  

The painful memories of my experiences not that long ago motivate me to spend a bit of time sharing the reality of the situation.  And I have been hearing even more painful stories from across the country about Canadians that are not able to get access to cancer drugs that have been approved for use in Canada, but are not funded in their province. 

That's a thing.  That happens.  These days.  And you never know when it may affect you until you're right smack dab in the middle of it.  

The reason I am telling you all of this now?  RIGHT HERE:  this excerpt from yesterday's press release by Save Your Skin Foundation:

"In June 2016 the first PD-1 immuno-oncology treatment for melanoma, Keytruda, was listed to the provincial formulary with a recommendation to fund either Keytruda or Yervoy, but not both – so that anyone having received either of these treatments through standard treatment or in a clinical trial as of June 2, 2016 would not have access to any other immuno-oncology treatment, regardless of having two distinct mechanisms of action. Meaning any patient who does not respond to one immunotherapy has no opportunity to access a second line therapy option (in the BRAF wildtype population)." 

:-(

It's not as hard as I thought it would be to share my opinion with the leaders of our country and as such, our health care system.  Please... take it from me (one who always backs away from politically-charged conversations) - if I can do it?  YOU can do it.  

Should you feel inclined to take a few moments to email - doesn't even have to be snail mail - our provincial and federal leaders to ask for the treatments that I needed but received only through clinical trial, or... really, I have been spoiled enough with all this surviving stuff... how about an Ask for those patients who have yet to be as fortunate as myself: those on the wrong side of the coin toss, the gene mutation, or the province borders. 

It is made very easy here! 

I will list the individual resources so you can skip more of my blabbing on.  But for those who might like more description, check it out below this list:

1. Send(with edits) this letter to  Federal Minister of Health: 

Hon. Dr. Jane Philpott

House of Commons Ottawa, Ontario Canada K1A 0A6 

TO: Jane.Philpott@parl.gc.ca

2. Send same letter(with edits) to your Provincial Minister of Health.  Find your province here.

3. Read this  

4. If you are able to do more? Check out the details below:

Patient Advocacy – How YOU Can Help: 
Patient Advocacy Tools and Templates

We urgently need your help. Now is a critical time to push for provincial and federal support for equal timely access to new treatments for all melanoma patients so that no Canadian is left behind.

We urge you to consider writing to your Federal Health Minister and to your local government representatives to convey a request for support. We have also included this template letter, as well as links to appropriate government contacts, making it easy to find out who your provincial and federal representatives are.

The Save Your Skin Foundation has assembled materials to assist you to do the following:

1. Write to your Members of Parliament to share your thoughts on this issue or to request a meeting – contact information for local government members can be found at: http://www.parl.gc.ca/Parliamentarians/en/members
2. Write to your MLA/MPP asking that he/she write to the Minister of Health (click here to download sample letter)
3. Prepare for and have a meeting with your MLA (talking points and fact sheet)
4. Report back the results of your MLA meeting – contact us by email or phone any time
5. Write a letter for your MLA to send to the Minister of Health
6. Write to your provincial Ministers of Health -(Click here to find out who your provincial Minister of Health is: http://healthycanadians.gc.ca/health-system-systeme-sante/cards-cartes-eng.php)
7. Write to the Minister of Health – contact information can be found here: Federal Minister of Health: Hon. Dr. Jane Philpott – https://goo.gl/MB1XtI

If you’d like a general overview of patient advocacy, you can also download our 2016 advocacy outline by clicking here.

Thank you for taking the time to become involved on behalf of everyone affected by Melanoma across Canada.

Together we can and will make a difference!

Let your voice be heard via social media as well!

Tweet or post to share your message to accounts such as @HealthCanada using hashtags like: 

#FairChance

#MelanomaTreatment #FightMelanoma #HealthCanada #PublicHealth

#CureMelanoma #MelanomaSurvival #PatientsVoice #PatientsFirst

Facebook: 
www.facebook.com/SaveYourSkinFoundation/
www.facebook.com/FondationSauveTaPeau/

Twitter:  
@saveyourskinfdn  
@sauvetapeau