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Save Your Skin Weekly Flashback [June 18-24, 2016]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! It’s the first week of summer in the Western world, which means it’s definitely time to start thinking about sun safety! Check out our recent blog about sun safety here. We’re also running a summer sun safety behaviour survey, which we would love for you to fill out! You can find it here.

 

If you missed the flashback last week, it is our pleasure to inform you that Save Your Skin Founder Kathy Barnard was awarded a BC Community Achievement Award in May! Shaw TV will be airing the event for the rest of June and into July; a broadcasting schedule can be found here.
Here are some images and links we shared with you this week:
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  • This cute video from Leo Pharmaceuticals about sun safety
  • This article from Sundicators about protecting your skin from the sun 
  • The American Academy of Dermatology’s new Melanoma PSA, “‘Arms’” 
  • This link to the draft of the Government of Canada’s Guidelines for Tanning Equipment Owners, Operators, and Users, with a feedback opportunity 
  • This article in Targeted Oncology announcing that the Melanoma Institute Australia and the University of Sydney have deemed the combination of pembrolizumab and ipilimumab as a safe treatment for advanced melanoma 
  • This article in Fierce Pharma that the National Institute for Health and Care Excellence has approved Bristol-Meyer’s combination of Opdivo and Yervoy for advanced melanoma patients
  • This Today piece about the “Mr. Sun” campaign, which aims to warn families about the possibly severe consequences of childhood burns 
  • This HelloGiggles article debunking 13 myths about sunscreen and skin cancer 
  • This piece from Cure Today  about the 2014 Cancer Experience Registry Report, “Elevating the Patient Voice”

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Danika’s Story: I was 19 years old when I had my first contact with melanoma

 – Guest Blog Post by Danika 
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I was 19 years old when I had my first contact with melanoma. I had a beauty mark on my back and it began to grow bigger and had a reddish hue.

A dermatologist did a biopsy and I had the diagnosis on December 28 2011; I was 19 and I had a malignant melanoma, the most serious form of skin cancer. I had a PET scan and a lymphoscintigraphy. Fortunately, at that time, I had no metastases. I had an operation to remove the beauty mark and the skin below and I was told that everything was fine. I only kept a scar shaped like a bird as a souvenir.

However, two years later, I was stage four melanoma.
The previous weeks, some lumps grew on my abdomen, my chest, and even my face. So we did biopsies and it was subcutaneous metastases. A PET scan later, I learned that I also had metastases to the liver, lungs and bones. At that time, I knew it was serious, but I had no idea how my life was about to change.

I was quickly supported by my hospital, the CHUM Notre-Dame, who proposed me to be part of a research protocol. I started taking tablets of « LGX818 », it was so new that they did not even have an official name yet. They were anti-BRAF drugs, since I had the BRAF mutation. One of the worst side effects that I had was peripheral neuropathy. It felt like having electrical shocks in my body. Then came the first scans results ; the treatment was working since some metastases decreased volume and no new one had appeared. Muscle pain, nerve, joint, skin problems, all of it was now worth it.

However, a few weeks after starting treatment, a new side effect appeared. In medical parlance, it is called “alopecia”. More simply, it means hair loss. Of course when you think chemotherapy you think hair loss, but my treatment was not supposed to do that, so I wasn’t prepared. In a few weeks I had to witness the loss of at least 50% of my hair, and believe me, I had a lot of hair! I found some in my bed, in the shower, on the couch, carpet, everywhere … I couldn’t take it anymore so I asked my mother to shave all of it. I anticipated this moment and yet none of us has shed tears. To my surprise, I was not so bad without hair. I still decided to wear a wig to school, to avoid passing from one extreme to the other and catch the eye of everyone.

After nearly 8 months of treatments, I had an appointment with my oncologist and I felt that something was wrong. Indeed, the latest scan results showed new lesions. My body got used to the medication and became resistant to it. We had to change treatment. New drugs were just emerging in Canada and were offering promising results. However, we must pass through a conventional chemotherapy before gaining access to the other treatments. These new treatments cost a lot of money so you have to « try everything » before.

A week later, it was time for that chemotherapy called Dacarbazine. It was the first time I found myself in these kinds of rooms, you know the rooms where there are several chairs next to each other, and on which are literally plugged patients. And of course, most patients are older and the majority have no hair. The image gives a shock. However, once installed in my chair, I noticed that the atmosphere was not so bad.

The next days were very difficult. I had nausea, fatigue and flu-like symptoms. I was going to school when my condition would let me. My next dose was scheduled three weeks later but it never took place. Bumps had appeared on my body; Dacarbazine wasn’t working on me at all. At least, now I had access to the new treatment. Again, I had to change course.

The new treatment, Yervoy, was actually immunotherapy, which rely on our natural immune system to destroy cancer cells, that’s the essence of immunotherapy. A few days later, on May 14, the day before my birthday, I found myself once again in the treatment room, but this time with another liquid pouring into my veins.

The first shot was held pretty well and I could finish my session. In addition, hair began to appear on my skull. However, bad news came back; I started to feel horrible abdominal pain. I even felt my tumors growing back. On the abdomen, I had a big lump like a cherry, right under my skin. So I felt it constantly.

I went to the hospital and the on-call oncologist decided to do the scans and all the tests right then. She came back several hours later with the results … Just by the look on his face, his way of coming to me, I felt it was bad. He sat on my bed, took my hand and said: “The news are not good, tumors got bigger, especially the one on the liver and it’s probably what’s causing your pain. ”

So … we turned to a fourth type of treatment in one year. I was exhausted. This was the latest treatment available in Canada for melanoma. It was still immunotherapy, but called Pembrolizumab (Keytruda).

The first Keytruda treatment went well. A few days later, the pain seemed to lessen a bit. I got to do some activities, saw some friends, etc. A few weeks later, the scan results finally brought some good news; after only 3 shots, metastases were reduced by approximately 50%! And I had almost no side effects; only fatigue the days following treatment, as well as vitiligo that appeared on my body.

So here I am, May 2016, I just turned 24 years two days ago, and my current treatment, pembrolizumab, is finally working. I had 13 shots so far and I will continue for at least another year. I hope that future scans will be even better than the last ones. I got back to school, my hair grew back and I can finally start to enjoy life again!

Those last two years were a rollercoaster of emotions. We all have the right, at times, to be afraid and desperate. The important thing is to get up and always keep in the back of our mind the hope to believe that everything will be fine.

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A Sun Safety Reminder from The Save Your Skin Foundation!

Summer has officially begun, and while it’s off to a cloudy start here at Save Your Skin in Vancouver, it’s important to remember sun safety during your outdoor activities! Though it is tempting to get a tan during the summer, keep in mind that the Canadian Cancer Society cites exposure to ultraviolet radiation as the greatest risk factor for the development of skin cancer. Melanoma is often a preventable disease, yet it is estimated that in 2017, 7, 200 Canadians were diagnosed with melanoma skin cancer and 74, 000 with non-melanoma skin cancer. That is why it’s essential to keep sun safety in mind if you’re working or playing outside this summer!

If you choose to wear sunscreen, it should have at least SPF 30, with UVA and UVB protection. The high SPF ensures that you will be well protected if you apply every two hours, while UVA and UVB protection shields you from both longer and shorter UV rays, respectively. It is a good idea to reapply more frequently if you are sweating or swimming, as moisture can rinse away sunscreen, and if you are at the beach, as sand can reflect ultraviolet rays. Remember to apply sunscreen to areas which are often forgotten, such as the back of your neck, your ears, the backs of your hands and the tops of your feet. If you are concerned about the chemical compositions of sunscreen, you can stay sun safe with organic sunscreens, which contain zinc oxide as their only active ingredient. They are available at most drug stores. Whatever sunscreen you use, remember to apply it fifteen minutes before leaving the house, so the ingredients have time to be absorbed into your skin!

There are ways to protect yourself from UV rays as an alternative, or in addition, to wearing sunscreen. These include wearing sunglasses to protect your eyes and prevent ocular melanoma, and a hat to shield the top of your head and neck and long sleeved shirts and pants. It is wise to seek shade whenever possible, especially when you don’t have the protection of sunscreen or clothing.

Sun safety is especially important for children. There are links between intermittent and intense sun exposure (resulting in burns) in adolescence and the development of skin cancers later in life, and skin cancer is the second most commonly diagnosed cancer in Canadian youth from 15-35 years old. While it is a good idea to introduce your children to sun safety early, keep in mind that the developing skin of babies is sensitive to both UV damage and the chemicals found in sunscreen. It is therefore best practice to keep babies out of the sun as much as possible.

If you live in a city with inconsistent weather, it is important to be protected even when the sun isn’t shining. The Skin Cancer Foundation estimates that up to 40% of the sun’s ultraviolet radiation can still reach the earth through clouds, so it is important to consider sun safety even when the sky is grey. While we recommend wearing sunscreen every day, check a UV index app if you need convincing; if the UV index is higher than 3, the US Environmental Protection Agency recommends taking full sun safety measures. While we may take it for granted, the skin is our largest organ, and it deserves to be taken care of!

Thanks for reading! On behalf of the The Save Your Skin Foundation, have a great and sun safe summer!

 

 

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Save Your Skin Weekly Flashback [June 10-17, 2016]

 

Welcome to the first Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! The Save Your Skin Foundation is riding high on recent successes this week; in May, Save Your Skin Founder Kathy Barnard was awarded a BC Community Achievement Award, and the event is being re-broadcast by Shaw TV! The airing schedule can be found here. In addition, the donations have been counted and our recent #unbeach fundraiser raised $15, 000, which is enough to help fifteen patients with their treatment, transportation, and meal costs! These events, running alongside National Sun Awareness Week (June 2-12), have granted Save Your Skin a great start to the summer!

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Here are some articles we shared with you this week:

  • This announcement by CNW that Canada’s Health Technology Assessment Agency has approved OPDIVO™ to treat non- small cell lung cancers
  • This PharmaTimes announcement that unfortunately, The National Institute for Health and Care Excellence has rejected use of Roche’s Cotellic/Zelboraf as a treatment for melanoma
  • This piece from the New England Journal of Medicine comparing the use of Pembrolizumab versus Ipilimumab in Advanced Melanoma
  • This article by the Indianapolis Star, which discusses the positive changes in the melanoma landscape thanks to new treatments
  • This article by Medscape about the dawn of ‘precision prevention’ of melanoma
  • This coverage by KCCI News down in Des Moines on the rising rates of melanoma in children and teenagers
  • This rundown by the Aim at Melanoma Foundation about genetic risk factors for melanoma
  • And this Bayshore Broadcasting coverage of the Canadian Cancer Society’s awesome Mudmoiselle fundraiser! If you’re in the Beaver Valley area, there is still time to register!

Thank you for supporting the Save Your Skin Foundation! Don’t forget sun safety while you’re outdoors this week, and we’ll see you on the next media flashback!


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See SYS Founder Kathy Barnard Receive Award on Shaw TV!

Starting today, Shaw TV will be airing the BC Community Achievement Awards, one of the recipients being Save Your Skin Founder Kathy Barnard! See below for air times in your area!

Her Honour Lt. Gov. Judith Guichon presents awards to 32 BC recipients, for their outstanding contributions to their communities.
Length: 90 minutes
A shorter version is also available on the Foundation’s website: http://www.bcachievement.com/community/video.php?id=10
Air Times:
BC Interior
(starting June 15 and running to June 26)

Kelowna, Vernon-Salmon Arm, Penticton, Merritt, Williams Lake, Quesnel, Prince George – Wed, Fri, Sun @ 7pm
Kamloops – Wed @ 7pm, Fri @ 7 pm, Sun @ 5:30pm
Dawson Creek, Fort St. John – Wed @ 7pm, Fri @ 8pm, Sun @ 7pm

Shaw Metro Vancouver
As far east as Abbotsford and as far west as West Vancouver. All cities/communities in between: North & West Vancouver, Vancouver, Burnaby, Richmond, Surrey, Port Moody,
Port Coquitlam, Pitt Meadows, Maple Ridge, Abbotsford, Langley, New Westminster, White Rock.

Sun June 19 @9:30am
Tue June 21 @9:30pm
Fri June 24 @5:30pm
Sat June 25 @10:30am
Sun June 26 @11:30am
Sun July 3 @11pm
Wed June 29 @4:30pm

Shaw TV South Vancouver Island

Tue June 21st @ 1pm
Wed June 22nd @ 10pm
Thu June 23rd @ 6am
Sat June 25th @ 3pm
Sun June 26th @ 7pm

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Announcing a new treatment for melanoma, along with two infographics (on Immuno-oncology and Melanoma), and new animated videos on cancer and immuno-oncology!

Announcing a new treatment for melanoma, along with two infographics (on Immuno-oncologY and Melanoma), and new animated videos on cancer and immuno-oncology!

Today, it was announced that KEYTRUDA® (pembrolizumab) received approval for the treatment of patients with unresectable or metastatic melanoma who have not received prior treatment with ipilimumab. KEYTRUDA is now the first and only anti-PD1 agent approved for first-line treatment regardless of BRAF mutation status.

A press release announcing this news was released earlier today and can be read here. The multi-media press release was issued with two infographics (on Immuno-oncology and Melanoma), and new animated videos on cancer and immuno-oncology.

We are also pleased to share to new amazing Patient Voice videos. We are continuously inspired by Save Your Skin Foundation patients, Mike and Pierre, who generously shared their stories for these videos.

Meet Mike: https://www.youtube.com/watch?v=rzCpNI7Huc8

Meet Pierre: https://www.youtube.com/watch?v=CiRdRboekYg

You can also see previous videos with Mike and Pierre on our I’m Living Proof website.

We are sharing all of this with you during an important time of year for skin cancer. Today marks the last day of Melanoma Awareness Month and it is the eve of International Cancer Immunotherapy Month (June). Save Your Skin Foundation will also be working to create further awareness of Sun Awareness Week (June 6-12) and National Cancer Survivor Day, which takes place on Sunday, June 5th.

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Kirk LaPointe’s reflection on melanoma cancer

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Kirk LaPointe’s does a daily reflection, and recently did a reflection on melanoma cancer. Here is the segment, featuring Save Your Skin Foundation Spokesperson Natalie Richardson and Dr. Jason Rivers.

A Skin Cancer Survivor’s Story:

As the warm weather approaches, so do the warnings about skin cancer. May is Melanoma Awareness Month, and this morning on Our City, Natalie Richardson, Spokesperson for Save Your Skin Foundation, joined Kirk LaPointe to share her story. Richardson is a mother of identical twins, writer, and melanoma survivor. When diagnosed in 2014, Richardson said her reaction was that it was “just skin cancer.” Today, after going through multiple surgeries, immunotherapy on a clinical trial, and experiencing the devastating impact the condition can have, she regrets this misperception. “I’m afraid for the potential for a shortened life. I don’t want to miss my kids growing up.”  Richardson now advocates to raise awareness about this deadly disease and has been sharing her journey on her blog, The Impatient Patient. Richardson, whose daughter was the one who initially encouraged her to go get a suspect mole checked out, is also a spokesperson for the Save Your Skin Foundation of Canada. She encouraged people to be vigilant about their health. “Look after yourself, or you’re not going to be there to look after others.”

Also on the show this morning was Dermatologist Dr. Jason Rivers of Pacific Dermaesthetics. He talked about common misconceptions around skin cancer. Asked whether he thinks there needs to be more awareness about the danger of skin cancer, he said “we’ve been doing public education programs for years … but some people don’t take heed. Especially boys age 18-24.” LaPointe noted that some people avoid sunscreen because they are concerned about the chemical content. Rivers responded, “There are studies that show that certain chemicals in some sunscreens can leech through the skin & cause hormone destruction, but to this point in time nobody has shown there is no risk of skin cancer.” However, Rivers noted that sunscreen should be used as an “adjunct” to sun protection. “No sunscreen is complete” he said. Instead – people need to slap on a hat and stay out of the noon-day sun. Apparently – the main prescription is for common sense.

To hear the full interview – listen here: http://bit.ly/1SWhrfU

 

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May is Melanoma Awareness Month. This is serious!

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I still can’t believe how often I hear “it’s just skin cancer”. Although awareness of skin cancer has increased over the last five years, skin cancer and melanoma rates in Canada continue to rise. I continue to read posts on social media that say things like “in the sun too long today #skincancerhereicome”. In fact we just launched a campaign around this, which you can watch here: https://youtu.be/eZiBnB-B8-g

As a stage 4 melanoma survivor, I find these posts shocking and sad. Skin cancer is a serious disease and is the most common type of cancer. It is also one of the most preventable. Over 80,000 cases of skin cancer are diagnosed in Canada each year, more than 5,000 of which are melanomas, the deadliest form of skin cancer. In 2016 it is estimated that 1,050 people will die from melanoma.

As an outdoor athlete (I was a professional baseball player for many years), I was outside all the time – and I wasn’t aware of the risks of harmful UV rays. And I learnt my lesson the hard way. In 2003 I was diagnosed with melanoma and in 2005 I was given only six months to live. Fortunately, I gained access to a new treatment through a clinical trial that would end up saving my life. So this is my call out to other outdoor athletes, outdoor workers, outdoor enthusiasts – anyone enjoying the outdoors. Have fun in the sun – but make sure you’re the sun safely.

Prevention plays an essential role. Skin cancer is caused by overexposure of the skin to UV radiation. The most common sources of UV radiation on the skin are the sun and artificial tanning beds. Though skin cancer is preventable and often treatable if caught early, it remains the most common form of cancer in Canada. Save Your Skin Foundation will be posting daily sun safety tips throughout the month on its social media pages.

Early detection increases survival. Moles, spots and certain growths on the skin are usually harmless, but not always. That is why it is important to examine the skin all over your body once a month, and have a physician check your skin once a year.

Look for the following “ABCDE” warning signs:
Asymmetry: Do the two halves not match if you imagine drawing a line through the mole?
Borders: Are the edges uneven, scalloped or notched?
Colours: Is there a variety of shades (brown, red, white, blue or black)?
Diameter greater than 6mm: Is the mole the size of a pencil eraser or larger?
Evolution: Has there been a change in size, shape, colour, or height? Has a new symptom developed (such as bleeding, itching or crusting)?
If you detect any of these warning signs, see a physician promptly. It is particularly important for you to select a physician who specializes in skin cancer and is trained to recognize a melanoma at its earliest stage.

Lets start a new conversation around sun safety and prevention. It’s not just skin cancer. #NotJustSkinCancer

– Kathy Barnard, Stage IV Melanoma Survivor

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Proud to Announce that SYSF Founder Kathy Barnard Wins BC Achievement Award!

 

Save Your Skin Foundation-Web Optimized-17

Premier Christy Clark and Keith Mitchell, chair of the British Columbia Achievement Foundation, today named this year’s recipients of the B.C. Community Achievement Awards. The Save Your Skin Foundation is thrilled to announce that the Foundation’s President and Founder, Kathleen Barnard, is one of this year’s award recipients.

In 2003, Kathleen Barnard was diagnosed with malignant Melanoma, the most serious of all skin cancers. In 2005, she was told that the cancer had propagated throughout her body with significantly sized tumors already accumulated in her vital organs. Tumors were found in her left lung, kidney, liver, and adrenal gland. Having received the only available treatment option in B.C., her prognosis was not good and she was given only six months to live. Left with little hope, Barnard’s family looked everywhere for help and located an oncologist researching a trial treatment. Barnard was able to receive the treatment through a clinical trial that would ultimately save her life.

2016 marks Barnard’s 10-year anniversary of being cancer free. It also marks the 10-year anniversary of the Save Your Skin Foundation. In 2006, Kathleen Barnard transformed her cancer diagnosis into a call for action and she is dedicated to changing skin cancer related policy through her Save Your Skin Foundation. Her leadership in addressing and raising awareness around skin cancer issues has made British Columbia a better and more sun safe community.

Skin cancer is the most common type of cancer. It is also one of the most preventable. Over 80,000 cases of skin cancer are diagnosed in Canada each year, more than 5,000 of which are melanomas, the mostly deadly form of skin cancer.

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#NotJustSkinCancer

by Natalie Richardson – The Impatient Patient

I was raised with a healthy respect for self-care and skin protection; I have a medium complexion so I “tanned well,” although I did get the odd sun burn and even a weekend of sunstroke at summer camp in my childhood. As an adult I took sun exposure seriously, but I still used tanning beds in the winter and I basked outdoors whenever possible in the summer. My draw to the warmth of the sun overpowered my consideration of the fact that I was putting myself at risk.

I was oblivious to the chance that I could be affected by the main contributor for skin cancer: long-term exposure to UV radiation from time in the sun. I was immortal. I wasn’t arrogant about it, I simply didn’t consider it might apply to me.

Little did I know I would be diagnosed with stage 3b (metastatic) nodular melanoma at the age of 37, in the middle of a busy career and raising twin daughters.

I had been feeling fine, rolling right along, and over the course of a few months a mole that I had had all my life changed colour and shape, and became itchy. Within a week of the mole being removed I was sobbing in the passenger seat of my own car on my way to the first of many consultations I would have with oncologists of all types.

Two years, four surgeries, and eight immunotherapy treatments later I am still recovering from the physical and emotional drain this disease has brought my family and myself. I spend all of my energy on my favourite parts of life, my kids, loved ones, friends… And, a passion for developing awareness of metastatic melanoma and its related issues.

My quest for more knowledge about melanoma led me to seek information and comfort from the internet, and thankfully I found Save Your Skin Foundation. Their positive words “Save the Skin You’re In!” drew me to their website and then to contact them directly via email, and then by phone. They were a beacon in the dark.

Save Your Skin Foundation wants to help people diagnosed with melanoma at any stage to feel they are not alone, and that there is hope for survival. “Together we are stronger,” is their sentiment, and with me it rings true as well. I have had the pleasure of working with them on a few small projects in Ontario, as I was immediately drawn by their warmth, friendly support and experience, and open kindness. I wanted to help them in return.

Last December I was honoured when they asked me if I wished to participate in the filming of a short video which was to be developed for use in a widespread social media campaign to be named #NotJustSkinCancer.

This melanoma awareness campaign is a collaboration of Save Your Skin Foundation and The Melanoma Network of Canada.

It is specifically a response to the complacency in social media toward sun exposure and skin cancer, as reflected in photos and messages using hashtags such as #SkinCancerHereICome and #SkinCancerDontCare, posted by social media users laughing about getting a sunburn or commenting on a fun day at the beach.

These grossly misinformed or blatantly abusive comments in social media do not amuse the families and friends of skin cancer survivors.

With this campaign we have a chance to discuss that and to inform others, perhaps help save youth from fates such as ours.

Several melanoma survivors gathered to share their stories on film. We were interviewed individually and we had time to interact together, and to react to a unique form of art with hand-made paper engraved with messages taken directly from social media users sites.

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The photos taken of this artwork are self-explanatory, and the discussion we had when filming was heart-wrenching. For example, the piece most compelling for me was the comment “I NEED a tan… sorry Mom #SkinCancerDontCare”

I care! As a mother, I care. As a daughter, I care. And I can tell you my mother cares, as she is living my melanoma experience with me.

I left the session feeling the gravity of the emotion in our group about the given topic, but I also left feeling hope and a renewed sense of possibility for survival.

Survival not only for myself and my new friends, Susan, Caroline, and John, but also for those who may be reached by this video and may take new consideration for sun safety and realise that skin cancer is not a joke or something to be taken lightly.

Now this video and its message is coming to light, and we can create positive influence by spreading a new and far more effective hashtag: #NotJustSkinCancer It is a platform for discussing the fact that this disease is serious and life-altering; no sunburn is worth the trade-off.

It is not JUST skin cancer, it IS skin cancer.

See the awareness video for #NotJustSkinCancer

Natalie Richardson

www.impatientpatientmomma.blogspot.ca

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