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Move for Melanoma After Party

Join the funnest part of MOVE FOR MELANOMA this year by joining our VIRTUAL AFTER PARTY! Celebrate with the Save Your Skin team, donors and fellow participants! Everyone is welcome!

The After Party will take place on Sunday, September 26th, 2021 at 5pm PT | 8pm ET on a platform called Topia. If you attended our virtual Giving Hope Gala in the spring, then you will know that Topia is a fun, new, online chat platform that allows us to connect virtually in a more human way. You’ll easily be able to move in and out of conversations with other attendees like you would in person with the platform’s spatial video, while also exploring a world full of surprises.

In the meantime, click here to share, participate in, and stay up to date on the progress of our 3rd annual Move for Melanoma event!

 

 

 

 

 

 

 

 

 

What you’ll need:

  • A computer or a tablet – You’ll need a Windows or Mac desktop or laptop computer equipped with a camera, or a Android Tablet or Ipad. For the best experience on Android tablets please use “desktop mode” in Chrome. 
  • A supported web browser – Topia works best on Google Chrome, Edge, and Brave on desktop and laptop computers. For best results we recommend using one of these three browsers.
  • Headphones – There is ambient sound in Topia which is personal to you. Headphones ensure a great experience. Without headphones, higher volume can result in feedback for other guests or mixed sounds which isn’t fun for anyone.

 

How to join:

  • On September 26th at 5pm PT | 8pm ET, click on this link to join: https://topia.io/save-your-skin-foundation. Don’t bother trying to go on beforehand as it will not be available.
  • When you first go in, you will be asked to choose a display name.
  • Your browser will ask for permission to use your camera and audio. If you have Zoom/Teams/Skype open you won’t be able to do this, so please make sure they’re closed first.

 

What to do once you’re in:

  • You can move around the space using either mouse clicks or your arrow cursor buttons.
  • You hear and see people better the closer you are to their little “Topi,” or person.
  • If you walk away from people you hear and see them less. People “fade out” as they get farther away.
  • As you explore, notice when your cursor turns into a pointer. This indicates that the object your mouse is on has a function. Click to interact with the object. 
  • You can mute yourself or others by clicking the speaker icon in the top right corner of your video or theirs. When muted the speaker will turn from black to red.
  • To send a private message to someone at the gala, click on the envelope symbol on their video. If someone sends you a private message, the envelope symbol to the left of your screen will become red. 

 

For complete instructions on how to use Topia and join the party, click here!

 

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Save Your Skin and Giving Tuesday

On November 29th, Giving Tuesday is coming to Canada! A compliment to Black Friday and Cyber Monday, Giving Tuesday is a day that stimulates the community instead of the economy by facilitating donation to thousands of charities across Canada.
There are many charities worth donating to on Giving Tuesday, and we always encourage helping your community by donating. If you are considering donating to the Save Your Skin Foundation, we thank you– and would like to fill you in a little bit on what we’re up to, and how your money would be used.
First and foremost, the money donated to the Save Your Skin Foundation goes to melanoma patients. The primary goal of SYSF is supporting families during the worst time of their lives; therefore we want the cancer patient and their family to be able to focus on the fight against melanoma, by alleviating the financial strain of cancer treatment. Whenever possible, we offer monetary assistance for transportation, accommodation, and food costs to melanoma patients travelling for trial treatments. Emotional support is equally a priority– Save Your Skin Founder Kathy Barnard is approachable for advice and support from someone who has been through the melanoma journey. Kathy Barnard’s knowledge of the treatment landscape and connections with Oncologists, Dermatologists, and other medical professionals is often helpful to patients who are unsure of how to navigate the medical system, such as finding treatment options and preparing for appointments. We also strive to make our websites Save Your Skin and I’m Living Proof hopeful, informative, and supportive, as the internet is often a discouraging place to look for those fighting melanoma.
The Save Your Skin Foundation represents the patient voice on the national and international level with its presence at conferences and meetings in Canada, the United States, and Europe. Nationally, Save Your Skin regularly meets with government stakeholders, pharmaceutical companies, and medical professionals to bridge the gap between these groups and the melanoma patient. Medical knowledge is further imbued to the patient via our educational YouTube video series, and our Webinars. These webinars feature a wide range of topics and guests, from medical professionals to melanoma survivors, and live recordings of past webinars are available on our website. Further, in 2017, Save Your Skin intends to develop an immuno-oncology network for medical professionals, advocacy groups, and the melanoma patient to further assist the patient in navigating immuno-oncological treatments, a recent and exciting development in the melanoma landscape.
Due to these incredible advances in medical technology and trial treatments in the past decade, we are pleased to report that melanoma survivorship is at an all-time high. From this new group of melanoma survivors, we are learning that the fight with melanoma doesn’t end at remission. Save Your Skin has taken several steps to be supportive of melanoma survivors, including the I’m Living Proof initiative, which allows melanoma survivors to tell their stories and connect with each other, and melanoma patients; we often include survivors in webinars and forums we are involved in hosting; and in 2017, we are intending to launch our Melanoma Survivorship Pilot Project, which will include national media campaigns, a survivorship e-book, a survivor survey and report, and a microsite. We also intend to host a survivorship meeting in the Spring of 2017, to ascertain how the needs of survivors are being met and what improvements could be made.
We’re looking forward to Giving Tuesday, and hope you will consider the Save Your Skin Foundation when you are selecting the charities to whom you will donate. If donating is financially a stretch, you can still participate by volunteering for Giving Tuesday, and tweeting with the hashtag #givingtuesday to spread the word! Thank you for reading, and happy giving!

Donate to Save Your Skin via Giving Tuesday here

GivingTuesday Countdown

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Shoutout to Slyde Handboards for Their Generosity!

Blog re-posted from the Slyde Handboard Website, October 22 2016

SLYDE AUTOGRAPHED MARK CUNNINGHAM BOARD RAISES $280 FOR SKIN CANCER AWARENESS

SLYDE HANDBOARDS BELIEVES IN DOING GREAT THINGS, AND GIVING BACK IN BIG WAYS.

Carlos our team rider from Canada recently completed a 365 day watermen challenge. In which he wave rode every day for 365 day without fail.

The challenge in effort to raise awareness and education for skin cancer.  The most common type of cancer, and one dear to Carlos’s heart as his father Marcel passed away from the disease.

Slyde alongside Raw Elements USA honored Carlos’s epic effort and his father by auctioning off an autographed Mark Cunningham Handboard & natural sunscreen package, with all proceeds going to Save Your Skin Foundation of Canada.

The auction saw a ton of action with the winning bid of $280 going to South African native Clint Buckham.

Thank you Clint for your generous donation, and everyone who participated.

REMEMBER TO SAVE YOUR SKIN AND  THOSE AROUND YOU, APPLY YOUR SUNSCREEN AND STAY PROTECTED BEACH LOVING FRIENDS.

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Why Save Your Skin Foundation?

Written by Natalie Richardson

 

This has been the most exciting few weeks I have had since I was diagnosed with metastatic melanoma. I feel an optimism unusual for my character since finding a potentially deadly mole on my hip in April 2014, when my world came crashing down with fear and worry. After surgeries and immunotherapy treatments, my body and my mind were left confused and full of dread.

I remember the exact moment I embarked on the path that would eventually lead me back into a productive life, with hope and determination as my new leads. Though I did not know it at the time, my discovery of Save Your Skin Foundation was a saving grace.

Depressed by internet searches about this disease, I relied solely on the word of my oncologists to guide decision-making in my care. Thankfully, I was fortunate to have an excellent medical team with a finger on the pulse of current treatments and clinical trials. My family and I did seek second – and third – opinions at Centres in Ontario, and I felt as secure as I could possibly be, choosing the course of my treatments with their guidance, via clinical trial.

By randomized-draw chance I received the treatment that I may always credit with saving my life, and I am grateful for that. But to this day I ponder what may have happened had I been on the other side of that trial draw. It bothers me, keeps that fear lingering. Not only fear for myself, but for others who may face the same risks that I have, and may not receive the same care. What if someday, my children were to face this diagnosis and did not have access to treatment?

In researching this question, I came upon a website with a warm first impression and a vastly informative set of links and options. I clicked and read and explored, not once feeling intimidated. I had to know more… the moment was right, and I had stumbled upon the right place: Save Your Skin Foundation.

I called the number, immediately reaching Kathy Barnard, melanoma Survivor, and Founder of this Foundation. Her distinctive voice put me at ease, and we talked about my situation and how fearful and alone I felt. She told me of her experiences with treatments, and I shared mine. She knew my medical oncologist as well as many others across the country, and she told me about new therapies on their way toward fighting melanoma skin cancer.

She determinedly said “You’re going to be okay.” And I believed her. I felt she might be right. She had run the gamut and come out the other side, and she understood what I was talking about.

My loving friends and family had been telling me that I would be all right, but when Kathy said it, it was different. My loved ones wanted it to be all right, but Kathy knew that there was actually a possibility that it WOULD be.

I have since learned that it is this determination and experience that has led Kathy and her family to build an educated team, in the form of a Foundation, to help others in this way. Many patients are touched by the support of this group; many lives are saved.

Emotionally and physically, Save Your Skin Foundation is there for any and every Canadian touched by skin cancer, whether it be a pre-cancerous lesion or a diagnosis of advanced metastasis. They share their experience, they research every medical detail, they work every day to help those in need of support in a skin cancer battle.

Since that day I first spoke with Kathy, I felt safe. I was comfortable looking around her website, watching the webinars and reading the notes carefully assembled. It remains a safe and reliable source of information about every stage of skin cancer.

Having gravitated to it for a year and a half, I have been dedicated to helping Save Your Skin save MY skin! And that of others. We network, collaborate, and identify with each other in a way that perhaps only those in our shoes can understand. It is a community of support available to those who need it.

It is at their invitation that I have had the inspiration to share my story so openly, encouraged in campaigns such as #NotJustSkinCancer and the Melanoma Through My Lens Reflection
Project. They have been a huge part of my rehabilitation, right down to the gentle reminders that I CAN still do the things I feared I had lost after diagnosis.

I feel great responsibility in being able to represent Save Your Skin in these kinds of projects, and at the same time I feel equal duty to represent fellow melanoma warriors, patients, families, and friends travelling their own skin cancer journey.

It’s the least I can do, in return for this gift of support and hope that I have been given. Thank you, Save Your Skin Foundation.

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Biosim•Exchange: A Resource for Staying Updated about Biosimilars!

While not yet a frequently heard term in melanoma treatment, biologic medications are making their way from arthritis to other chronic illnesses, including cancers. Biologics are medications that are created from living organisms, such as bacteria or yeast, as opposed to chemicals. The second iterations of these products are biosimilars; the closest imitations to the first products possible, though the chemical compositions of the first cannot be exactly duplicated.

Like other medications, biosimilars in Canada require chemical equivalence trials before being put on the market. These trials include a comparison of the mechanism of action, rate of administration, dosage form, and strength of the original medication and the biosimilar. This is to ensure that there will be no difference in the safety or efficacy between the two medications.

As biosimilars are most often developed for the treatment of arthritis, the Arthritis Consumer Experts (ACE) are leaders in the biosimilar field. Since 2009, the ACE has been working with advocacy groups, patients, healthcare, and government stakeholders to support the development of a medication approval and reimbursement access regime. Recently, ACE launched the Biosim•Exchange website. Biosim•Exchange is an information hub for consumers to learn about biosimilars, stay up-to-date on biosimilar news, and background analysis of biosimilars currently on the market. Having this information helps patients participate in forming their treatment plan, and encourages collaboration between patients and their medical team.

Biosimilars are a rapidly developing option for the treatment of chronic illnesses. To stay on top of advancements in this field, check out Biosim•Exchange!

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Save Your Skin Weekly Flashback! [September 12-18]

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! This week, we’re excited to announce our new educational video series, which we hope will answer your questions about a variety of skin cancer issues! There are already some videos up there, so be sure to check it out.

We’re also busy getting prepared for our upcoming public forum on October 6 in Nanaimo, B.C., hosted by Dermatologist Gabrielle Weichert, and melanoma survivors Nigel Deacon and Meloney Edgehill! More information can be found on the poster below.

PatientForumPoster_Oct2016

 

Here are some links we shared with you this week:

-This piece on immunotherapy in the Ottawa Citizen

-A link to the Canadian Daily UV Index Forecast

-A summary of our roundtable discussion about whether early detection and prevention in primary care can benefit patient outcomes

-This article on Entertainment Tonight Canada about Khloe Kardashian’s skin cancer scare!

-This piece on My Toba warning about the particular skin cancer risks for those over 50 years of age

-This article in the Ottawa Citizen about the hunt for immunotherapy funding

-And this lovely photo of two Save Your Skin Team members, Rose and Marion, who recently raced in Oregon wearing SYSF jerseys! Way to go, team!

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Thank you for reading, and stay sun safe out there!

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Merck and Pfizer Collaborate on Potential Merkel Cell Carcinoma Treatment

Merkel cell carcinoma (MCC) is a rare form of skin cancer, making up fewer than 1% of all non-melanoma skin cancers (Canadian Cancer Society, “Merkel Cell Carcinoma”). It manifests as malignant cells that form in the upper layer of skin, near the nerve endings that sense touch (Merck-Pfizer Alliance, “Merkel Cell Carcinoma Fact Sheet”). Merkel cell carcinoma often appears on sun-exposed areas of the skin, such as the legs, arms, neck, and head, as a blue or red lump on the skin. It most frequently occurs in fair-skinned males over 50 years of age (Merck-Pfizer Alliance).

Merkel cell carcinoma has a higher mortality rate than melanoma, with a mortality rate of 33% within five years of diagnosis (all stages) (Merck-Pfizer Alliance). Due to low awareness of merkel cell carcinoma, late diagnosis often results in the disease having reached stage III or IV(Merck-Pfizer Alliance).

Current treatment options for merkel cell carcinoma include chemotherapy, radiotherapy and surgery. These treatments are generally ineffective for advanced stage merkel cell carcinoma, resulting in a mortality rate of roughly 80% for stage IV metastatic merkel cell carcinoma patients (Merck-Pfizer Alliance). There is a gap in treatments for merkel cell carcinoma, and a need for more research and the staging of clinical trials to fill that gap.

Fortunately, at least one new treatment is in the works. JAVELIN merkel 200 is the title of an ongoing clinical study investigating the effects of avelumab, a treatment jointly manufactured by pharmaceutical developers Merck (Germany) and Pfizer (USA), on pre-treated patients with merkel cell carcinoma. The treatment inhibits PD-L1 interactions (Pharmaceutical Technology, “Merck and Pfizer’s Avelumab gets Breakthrough Status for Merkel Cell Carcinoma”), acting as an immune checkpoint inhibitor. The trial produced the largest set of data, in this patient population, of any anti-PD-L1/PD-1 (Pfizer, “ASCO 2016: Pivotal Avelumab Study Shows Positive Results in Metastatic Merkel Cell Carcinoma”). The results reported at the 52nd annual American Society of Clinical Oncology (ASCO) in Chicago this past June were promising: of 88 patients, 28 (31.8%) demonstrated an objective response rate during the Phase II study of avelumab (Pfizer). Of those that responded, 8 (9.1%) achieved complete responses, with 20 (22.7%) achieving partial responses (Pfizer). Of the entire trial, 62 (70.5%) patients experienced treatment related adverse effects (AEs), with the most common being fatigue (23.9% of patients) and infusion-related reactions (17%), with four patients (4.5%) experiencing grade 3 side effects and zero with grade 4 side effects (Pfizer). The ages of the trial participants ranged from 33-88 years old, and every participant had been pre-treated with chemotherapy (Pfizer). The patients received 10mg/kg of treatment intravenously every two weeks (Pfizer).

While avelumab is still in the trial stage, if it is approved, it will be the first approved treatment for Merkel Cell Carcinoma. Current information about the status of the trial can be found on the American clinical trial database or Pfizer’s website.

 
Works Cited:

Canadian Cancer Society, “Merkel Cell Carcinoma”.

Merck-Pfizer Alliance, “Merkel Cell Carcinoma Fact Sheet”.

Pfizer, “ASCO 2016: Pivotal Avelumab Study Shows Positive Results in Metastatic Merkel Cell Carcinoma”.

Pharmaceutical Technology, “Merck and Pfizer’s Avelumab gets Breakthrough Status for Merkel Cell Carcinoma”.

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Save Your Skin Weekly Flashback! [Sept 5-11]

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! This week, we are excited to point you towards the most recent publication Save Your Skin has been involved in, CONSENSUS REPORT: Recognizing non-melanoma skin cancer, including actinic keratosis, as an occupational disease- A Call to Action,” in the Journal of the European Academy of Dermatology and Venereology! We’d also like to remind you of our next event, our “Mountain or Mole Hill?” skin cancer forum in Nanaimo, BC, on October 6th! Details can be found in the banner below.

 

PatientForumPoster_Oct2016

 

Here are some links we shared with you this week:

-A reminder to check out our “Melanoma Through my Lens” project, if you haven’t already!

This blog post by Doris Day, M.D., about the importance of sunscreens and choosing the right one for you

This Centers for Disease Control and Prevention guide to sun safety for children, which includes resources about sun safety for students

This article from the Canadian Cancer Society’s Research Information Outreach Team about the emergence of oncolytic virus therapy

This story in The Globe and Mail about Dr. Brian Day’s fight to lift the ban on paid-for private health care for “medically necessary” care

 

Thanks for reading, and be sure to stay sun safe even when the weather is cooling off!

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Event: The Third Annual Bill Fox Memorial Golf Tournament

Looking to golf for a good cause? If you’re in the Granton, Ontario area, check out the third annual Bill Fox Junior Memorial Golf Tournament! Held on September 10 at the Fox Golf Club, the event will honour late CPGA professional golfer Bill Fox, who passed away at fifty years old from melanoma. Since 2014, the Save Your Skin Foundation has collaborated with the tournament to ensure sun safety on the day, and promote melanoma and sun safety awareness. The tournament will consist of a shotgun scramble with teams of four, and a passport for purchase that allows participants to take part in the longest drive, closest to the pin, and other contests! The winning team will have their names engraved on the Bill Fox memorial trophy, which remains at The Fox year round. Registration fees include the cart, range balls, a hot dog lunch (with a drink ticket!), and a ticket to the steak dinner and silent auction that will round off the evening! Tickets for the dinner can be purchased individually without participation in the tournament. If you’re a golfer in the area, come out for a good cause- and don’t forget your sunscreen!

 

*Vegetarian option for dinner available upon request.

All skill levels are welcome.

Registration Deadline: September 3rd.

Registration is $115 per person.

Register at: 519-225-2757 or billfoxgolftournament@gmail.com

Registration deadline is August 10.

Tickets for dinner only available for $35.

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Save Your Skin Weekly Flashback! [August 28th-September 4th]

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! First off, we’d like to thank everyone who has tuned in to our last webinars, a post-ASCO review with Dr. Omid Hamid, and “Choosing the Right Sunscreen” with Renée-Claude Lachapelle! If you are interested in learning more about melanoma and are located on Vancouver Island, we’d love to see you at the forum we are running on October 6th in Nanaimo, B.C., with our friends at La Roche-Posay and Leo Pharma! It will be hosted by Dermatologist Dr. Gabriele Weichert, and melanoma survivors Nigel Deacon and Meloney Edghill! More details can be found in the banner below.

 

PatientForumPoster_Oct2016

 

Here are some links we shared with you this week:

-These amazing New York Times articles covering the emergence of immunotherapy and the story of one man’s intensive treatments

This piece in BC Cancer Foundation’s Partners in Discovery about NeTracer, a radionuclide therapy program that is set to begin in BC within the year

This video on Oncology Tube in which Dr. Omid Hamid discusses the future of immunotherapy and new clinical trials

This piece in News Medical about iris melanoma- Always wear sunglasses!

These sun safety tips from Doctors Nova Scotia

This piece on Dr. Yvette Lu’s blog debunking sun safety myths

This American Academy of Dermatology guide to skin self exams

These sun safety tips from Sunburn Alert

This Express article about the dangers of burning while driving

This Aim at Melanoma Foundation guide to a skin self-exam

 

Thanks for reading! Remember to keep checking the UV index to see if you should be wearing sunscreen, even as the weather turns more grey!

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