Let’s Continue the Momentum

By Logan Kastner
Director of Marketing and Development

The month of May flew by with a tremendous amount of energy and effort devoted to raising awareness and funds for melanoma. It was inspiring to see so much buzz in the news and on social media about the importance of using sun protection and taking the appropriate steps to reduce your risk of melanoma.

The Melanoma Research Alliance (MRA) is committed to keeping the momentum alive and excited to share ways you can stay involved throughout the summer. Here’s how you can continue to show your support:

  • Tell us why It’s That Worth It – Upload a 15-second video or photo demonstrating to your social community why SPF protection or sunless tanner is THAT worth it to you. Use #ItsThatWorthIt on Facebook, Twitter or Instagram and L’Oreal Paris will donate $1 to MRA, up to $250,000. Take a few seconds to check out one of our videos!
  • Support Camp Gorgeous –Neiman Marcus is partnering with over a dozen companies that are generously donating 10% of the net proceeds of select suncare-product sales to support MRA during Camp Gorgeous, June 4-14. Neiman Marcus will match their donations dollar for dollar.
  • Check out Mott 50: Use the code MELANOMACURE at checkout from June 15-21 and Mott 50 will provide a 20% savings and donate 20% of sales to MRA.

An established leader in cancer research, MRA is paving the way to new treatment options for melanoma patients, and the impact is being felt in the entire cancer community. Due to the generous ongoing support of the organization’s founders, Debra and Leon Black, 100% of donations support MRA’s research program. Our work is far from over. Let’s continue the momentum toward finding a cure for melanoma!

About The Author

Logan E. Kastner is Director of Marketing and Development for the Melanoma Research Alliance. Kastner joined MRA in 2015

An Outdoor Enthusiast’s Guide to Playing It Sun Safe

divingoffboatsmaller

Johnie Gall || DirtbagDarling.com

Over the past few years, “fear” has become something of a challenge in my vocabulary. I went from someone who was scared to try surfing to someone who lives out of a revamped Dodge Sprinter van traveling the country in search of adventure. I’ve been fortunate enough to surf in Hawaii, to hike the highest peaks in Colorado, to snorkel with sharks in the Florida Keys, and to free rappel 200 feet from an arch in the middle of the Utah desert.

That’s not to say I’m fearless—there are many things that still frighten me about spending so much time in the outdoors. Bears. Falling. Broken limbs. Getting lost. Melanoma.

Yes, melanoma is a very real consideration of everything I do—though you might not believe me judging my criss-cross lattice of tan lines and premature wrinkles. Tan happens, especially when you spend the majority of your day outdoors (all the sunscreen in the world won’t change that), but so does melanoma, and I’ve chosen not to be so bold as to think it won’t happen to me. That’s why protecting my skin has become as much a part of my adventure prep as loading up my backpack and buying spare fuel.

Don’t get me wrong—I wasn’t always so cautious about skin cancer. Flashback to high school and you’d find me in a tanning booth prepping for prom and roasting at the beach with my friends. I thought hiking was synonymous with sports bras and fishing meant donning nothing more than a bikini. I actually shake my head thinking of the damage I did, but like they always say, hindsight is 20/20.

That lifestyle came to screeching halt when I took my first trip to the dermatologist in my late teens—I had a mole that looked suspicious, and my doctor wanted it off. After the biopsy, he told me it was benign. The danger was over, but the shock that something I’d always (foolishly) thought could never happen to me was actually happening was still there. It was a huge wake-up call, but I was lucky.

After my initial scare, I know that skin cancer prevention begins long before the threat becomes deadly and these days, when being outside is part of my job, I know that shielding my skin doesn’t have to mean sacrificing my active lifestyle—it just means getting creative. Here’s what I do to stay protected:

Sunscreen: Because I spend a lot of time in the water, I need a screen that won’t harm the coral reefs or marine animals when it washes off. I never leave the house without at least coating my hands, feet and face with SPF 30, and follow up with a water resistant one all over my body as soon as we start any activity.

UPF Clothing: How genius is sun protective clothing? It’s one of the first things I look for in my outdoor clothing—the good companies always make their sweat-wicking shirts and pants with UPF 15 or more. When in doubt, I slather on a layer of sunscreen under my clothing, too.

In the water: I rarely go swimming in the ocean without a rash guard—but long gone are the days when donning a quick-drying shirt meant a men’s style tee or neon monstrosity. I’m lucky enough to have a few friends who are at the helm of swimwear companies aimed at protecting skin, so surf leggings and rash guards are always in my bag or stashed in the trunk of my car.

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Giant. Hats: Here’s the great thing about wearing hats—you never have to worry about what your hair looks like. I can go without a shower for a week (something I often have to do living out of a van) and no one is any the wiser. I stock up on lifeguard-style straw hats at the flea market for summer and keep a collection of wool beanies, baseball caps and floppy felt hats in my closet for the colder months.

And if there’s one thing everyone should buy, it’s a white fishing shirt (yes, even if you hate fishing). They are light, airy, and dry like lightening. Dunk them in the water to cool off on boat rides, or wear them over your hiking clothes on hot days.

Most importantly, I’ve learned to find ways to stay out of the sun. My philosophy is this: being outside is part of my life. It always has been. It always will be. Tan will happen, but as long as I’m making every effort I can to stay safe, then I won’t have any regrets (and hopefully a healthy and happy skin suit!).

 

About the Author: Johnie Gall is the founder of DirtbagDarling.com, an online magazine for women that aims at inspiring and educating women of all skill levels on how to make the most of their outdoor experience. She’s a writer and a creative consultant who calls Pennsylvania home base (but you’re more likely to find her traveling the country in her Dodge Sprinter turned RV).

 

One Family’s Fight with Pediatric Melanoma

By: Angela de Jong

Alyssa was diagnosed with melanoma at age nine

On May 4, 2012, I took my nine-year-old daughter Alyssa to the dermatologist for a second time.  In 2009 they had removed a Spitz nevus from her thigh area. At the time we were told that a Spitz nevus is not harmful, but since they can turn cancerous and since experts have a difficult time differentiating them from melanoma, they are typically removed. This time, we were there for a couple of spots that had grown since she started growth hormones the previous March since she is also short stature.  Many spots were checked and okayed, but one of the spots “looked suspicious,” and so they did a biopsy.  It was a small red, raised area on her left forearm.  We were told at the time that skin cancer doesn’t happen in kids under 13.  Alyssa was 9, so it was nothing to really worry about.   A few weeks later, the dermatologist called to say it was melanoma.

Our journey began at Le Bonheur Children’s Hospital, where they did a wide excision to remove all the area around the melanoma.  Our surgeon then referred us to St. Jude Children’s Research Hospital where we met her oncologist, Dr. Pappo.  There was a lot of discussion over her case.  At first we were told the melanoma was in situ and that they had removed it all with the surgery.

A raised, red area on Alyssa’s arm turned out to be melanoma

A few days later we got another call.  After bringing Alyssa’s case up in a weekly case meeting of some sort, Dr. Pappo decided we needed to do a sentinel lymph node biopsy just to see if any microscopic cells had made their way to her lymph nodes.  So surgery number two was scheduled at St. Jude to remove the sentinel lymph node, which was on the direct path from the spot on Alyssa’s arm.  The doctors and surgeons said they felt they needed to make certain that the cancer had not traveled.  I don’t know if we were in denial or what, but we felt this was just a precaution and that it would be okay.  Melanoma is so rare in kids especially under 13, right?  All signs led to no cancer.

After Alyssa’s surgery, St. Jude called to tell us to come back in the next day.  They expected the results to be in by then.  I called my husband and cried.  We both knew that if the news was good, they would have immediately told us on the phone.  We arrived at the office and waited.  It felt as if someone had plunged this hand into my stomach and was twisting it and had their other hand in a death grip on my throat.  In my entire life, I have never felt so scared.  As they explained that the node had come back positive,  I cannot even think of words to describe how devastated and helpless we felt.  So St. Jude did a third surgery to remove 21 lymph nodes from her arm area in hopes the cancer hadn’t made it there.  Fortunately it had not, leaving us with a diagnosis of Stage IIIa Melanoma.

Alyssa has an extensive hat collection and always practices safe sun

Alyssa is followed closely now by her oncologist and dermatologist.  But the word cancer is now a part of our life and we cannot forget it.  As each appointment gets closer, I feel that dread and worry sneak up into my stomach and throat all over again.  Every time they tell me she is okay, I take the deepest of breaths and feel my whole being relax.  We don’t live in fear, but not a day goes by when we don’t think about it.

Alyssa now owns a huge collection of hats that she wears every time she is outside.  We have sunscreen in our cars, kitchen, bathrooms, garage, back porch, school backpack and my purse.  Every morning before she gets dressed she must put on sunscreen.  She takes a bag with her to school for recess that contains sunscreen, a hat, and sleeves for her arm.  Even in Memphis when it’s 100 degrees, she puts on those sleeves.  Our family spent thousands of dollars to strategically place many large cantilevers around our pool so she can swim.   She has all long sleeve bathing suits.  And even then, we don’t even think of swimming during the heat of the day.  Most days all of these precautions are routine.  But some days she really hates them.  She would love to just skip it all.  But now we know that is not an option.

Alyssa and her family at the American Idol Live! Tour finale in Nashville

Now Alyssa’s goal is to help her friends understand sun safety.  Sun is good, but sunburn is bad.  Every expert we talked to has told us that sunburns as a child can increase your chance of getting skin cancer as an adult.  And melanoma is starting to hit younger ages more than ever before.  I know it adds a few minutes into your already busy schedule, but the moments spent protecting your children’s skin will be worth it in the long run, I promise.

Melanoma research has made strides in recent years due to the work of organizations like MRA and committed researchers around the world.  But, further research into malignant melanoma, especially in children, is critically needed.  Scientists are working with doctors at St. Jude to discover the best treatment for this rare pediatric cancer since the current youth treatment data has been taken from adult studies.  St. Jude is studying this disease in children to help formulate the best treatment protocol for their pediatric patients.  Ongoing clinical trials are crucial to discovering the genetic make-up of melanoma, and to collecting the data scientists need to understand how melanoma grows and develops in children. You can learn more about pediatric melanoma and St. Jude’s trials and research studies here.

You can read more about Alyssa and her journey on her blog at www.teamalyssarocks.com

Learn from my sunscreen mistakes

Here goes my shameful confession: I work for the Melanoma Research Alliance and I still got a sunburn.  Everyone makes mistakes at a new job, but mine were entirely preventable.

Shadow

It was a bachelorette weekend in Florida that did me in.  I had high hopes for three sun-safe days hanging out on the beach.  I even checked my suitcase to accommodate the array of four different sunscreens I brought down.

Despite my good intentions, I ended the weekend with sunburns on my lower leg and chest, and had to wear long pants and shirts to work for a week to disguise my misadventures.  More seriously, since I work in the melanoma space, I know that sunburns like these can increase my risk of developing melanoma.  And that’s scary.

As summer heads into the homestretch, I’d like to offer up my sunscreen mistakes so others can avoid them.  After all, a sunburn born of good intentions looks and feels just as terrible (and is just as risky) as a reckless one.

Mistake 1:  Hitting the beach without a first coat of sunscreen

We bounded out of bed on our first morning at the beach, super excited to get down to the cabana so the vacation could officially commence.  I threw some SPF 50 and 30 in my bag, figuring I’d take care of lotioning up once we got on the beach.

The easiest time to apply sunscreen is in the privacy of your own home, before getting dressed for the beach.  You can twist yourself up in sorts of poses you’d rather not showcase in public, getting at those hard-to-reach areas and avoid the dreaded “missed spot.”  Additionally, MRA and other groups recommend that sunscreen be applied at least 30 minutes before heading into the sun.

Mistake 2:  Reapply, why?

After suffering some “missed spots” on my knees on day one of the vacation, I vowed to be far more careful in my sunscreen application on day two.  I woke up and applied my SPF 50 sunscreen everywhere before leaving the hotel for the day.  Feeling good about learning from my previous sunscreen mistake, I relaxed and enjoyed a day of swimming and reading gossip magazines.

Applying a full coat of SPF 50 at 9am does not create an impenetrable armor of sun protection that lasts the entire day.  Yes, you should feel proud about hitting the beach covered in SPF, but don’t think you’re done for the day.  According to the AAD, sunscreen should be reapplied every two hours, and more frequently if you are sweating or swimming.  Going to the beach usually involves both of those activities, so stay mindful of the time that has elapsed and reapply accordingly.

Mistake 3:  Relying on only one type of sun protection

Using several methods of UV protection is better than relying on just one, plus, hats and UPF-blocking clothing and accessories are sun smart and add extra style to your beach ensemble. If I had been using some of these products, my sunscreen mistakes may have been mitigated, and maybe I wouldn’t have had to slink around the office for a week waiting for my telltale sunburn to fade and hoping that it doesn’t come back to haunt me in the future.

I’m happy to say, I’ve learned from these mistakes and realized that sun protection is more than bringing sunscreen to the beach, it’s planning ahead and developing sun safe habits that will last a lifetime.

Have a sun safe and fun 4th of July weekend everyone!

Changing Perceptions and Building a Business on Safe Sun: Guest Post by Mott 50

By Monique Moore, Co-Founder, Mott 50

Mott 50 Pale is Pretty Campaign

We are a society that is obsessed with tan—so much so that “pale” has practically become a four-letter word. But this obsession is catching up with us.  With skin cancer affecting over 2 million Americans each year, it’s the most common form of cancer in the US. In fact, there’s been an 800% increase in melanoma among women 18-29 in the past forty years, and each year there are more new cases of skin cancer than new cases of breast, prostate, lung, and colon cancer combined.

Skin cancer is a disease that seems very distant when you’re young.  But the reality is that everyone is susceptible to the disease, and often by the time we’re old enough to fully understand its severity, the damage is done.

I launched the fashion-forward sun protective clothing line Mott 50 with my business partner Anne Botica Reilly in 2011 upon realizing the need for more stylish, sun protective clothing. We saw our friends becoming increasingly conscious of sun protection for anti-aging purposes.  At the same time, Anne was influenced by her own personal experiences having a history of skin cancer in her family.  Together, we are working to spread the word about sun safety!
Mott 50's UPF Clothing

Each Mott 50 garment is made of lightweight, natural fabrics that are certified as UPF 50 by the IUVTL (International UV Testing Laboratory) in accordance with AATCC (American Association of Textile Chemists and Colorists) standards. This is a major departure from the average white t-shirt that has a UPF of just 5, meaning that while you don’t burn through regular clothing, you are still exposing your skin to damaging UVA rays.

Too often, we focus on fixing a problem once it arises rather then taking measures into our own hands and focusing first on prevention.  Anne and I believe real change comes from changing people’s perceptions and behaviors.  Mott 50 sundresses and soft basics  allow people to effortlessly enjoy life outdoors in a fashionable and sun-conscious way.

Mott 50 Co-Founders Anne Botica Reilly and Monique Moore

Mott 50 Co-Founders Anne Botica Reilly and Monique Moore

This summer Mott 50 is introducing the Pale is Pretty campaign— a social awareness initiative designed to encourage people to think critically about their sun safety practices and pledge to ‘Practice Safe Sun.’ Our mission at Mott 50 is to educate and provide an easy-to-wear solution for sun protection.  But beyond that, this campaign focuses on celebrating one’s natural beauty and giving back to likeminded organizations like the MRA.  Philanthropy is fundamental to our company culture.

If you are interested in making the Pale is Pretty pledge, simply share or retweet Mott 50’s content on Facebook or Twitter. For every Facebook share, Mott 50 will make a $5 donation to benefit MRA’s research programs, up to $500. For every retweet, Mott 50 will make a $1 donation, up to $100.

For more information visit Mott50.com or visit Mott 50’s Facebook page at facebook.com/mott50.

New Melanoma Stories

Melanoma has touched the lives of many people, and MRA is always eager to hear melanoma stories from patients, researchers, family members, and everyone else affected by this disease.  We’ve recently added two more must-read survivor stories to the MRA website, and here’s a preview:

Phil Dunn

           Krista Giovacco

Phil Dunn

       Krista Giovacco

“Melanoma should be the last thing on the mind of a twenty year-old college junior, especially toward the end of the fall semester. But it was the only thing on my mind…”

“What was smaller than the head of pencil eraser is now a four-inch thick scar and a reminder that early detection is crucial...”

Safe Sun Style: Guest Post from Meg of SPF Love

It’s a common misconception that sun safety is not fashion-forward.  Our guest blogger and May ally SPF Love begs to differ.

Meg of SPF Love

I’m honored to be guest blogging for MRA.  I started my journey over a year ago when I decided to start SPF Love one sleepless night.  I’d been looking for a creative outlet, and a place to make a mark.  On this particular night it became clear and I never looked back.  Initially I needed to convince myself that I could still live a beach lifestyle but do it safely.  My past is full of sun-filled adventures and brown skin, but a brush with melanoma in 2008, confidence in my personal style, and maturity changed all that.

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I never run out of content on the safe sun lifestyle, from the most stylish rashguards to sunless beauty tips.  SPF Love’s audience has grown organically as there is definitely a changing attitude toward sunning and sun safety these days.

I found the MRA early on, when doing some research on melanoma-related charities. Coincidentally I had just been to a Bruce Springsteen show and so my relationship with the Danny Fund began.  The Danny Fund is a program of the MRA that raises melanoma research funds and awareness in memory of the E Street Band’s Danny Federici.  From a holiday shopping fundraiser at Letarte Swimwear to donating a portion of the proceeds of all SPF Love tees to the Danny Fund, I’m so happy to be making a difference with the MRA.

This summer, in addition to spreading the word about this truly avoidable disease, treat yourself to SPF Love! You can continue into my blog to see some of my favorite sun safe goodies!

Have an amazing and safe summer everyone.  Please join me and help spread the love!

Subscribe to the blog at spflove.com and like us on facebook.com/SPFLove