Skin Diaries This is Brave

This is Brave: Susanne Milne

In May 2009, I noticed a mole on my thigh had changed. The surface had become rougher, so I made an appointment with my dermatologist as quickly as possible. They removed and biopsied the mole and sent me away with a weekend of worry about my diagnosis. On June 3rd, I received the news that the mole was in fact melanoma.

I immediately connected with a team of doctors at NYU Langone Health. They identified it as Stage III Melanoma and scheduled an operation to remove it. I powered through that operation, and a following one to remove lymph nodes adjacent to the mole. By August 18th, I was given the all-clear as all my scans showed No Evidence of Disease (NED), and I continued my life at full force.

The changes to my life were small following this intense two-month period of surgeries. Mainly, it consisted of diligently applying sunscreen and quarterly mole checks. With a Stage III diagnosis, there was a 50/50 chance the cancer could come back. After two years, if all went well, I’d be able to go every six months. Aside from sun protection and appointments, I continued to work hard as an architect while enjoying all New York City can offer with the support from my family, extra-mums and great friends.

By Fall 2013, I had been cancer-free for four years and my fear of it returning had diminished greatly. When it came time for my second scan of the year, I was less nervous than I had ever been. However, the scan showed something in my lung. A specialist reviewed it and recommended a biopsy. I spent New Year’s Eve 2013 having a biopsy of my lung. I started 2014 with the anticipation of possible bad news.

The news came January 3rd, 2014; I had a tumor in my lung and was now a Stage IV Melanoma patient. This was the start of five-year pinball game of tumors in my liver, brain, liver again, brain again and again, stomach, breast, lung again and adrenal gland. The only way through this was surgeries, different medications and immunotherapies—all with their own set of side effects. I was able to reduce my cancer, and the few tumors I still have are stable and no new tumors have come up since September 2018. However, I’m still waiting to hear the magic words “No Evidence of Disease”.

Generally, I don’t speak a lot about my disease and have kept my journey private; but meeting other patients and caregivers has allowed me to look at my situation differently. I have been lucky in the sense that I have always received excellent care, all my surgeries have gone extremely well (even the scary brain surgeries), and I have been able to work full-time throughout my cancer journey. This is proof of my own tenacity, courage and optimism, but more importantly the support of my medical team, workplace, amazing family, extra-mums and friends. Knowing that I have been so lucky has helped me expand my focus beyond my own story to a bigger cause.

In January 2015, I joined the Melanoma Research Foundation (MRF) to connect with other melanoma patients and be an advocate for melanoma research and education. Being part of the MRF has been rewarding on many levels. I have made new friends who are melanoma warriors and have become an advocate for education, awareness and prevention. Each year, I travel to D.C. for the MRF’s Hill Day where we approach Senators and Representatives to speak about melanoma as an advocate for sun protection use, tanning bed legislation, among other things. Being a part of the MRF in this way has taught me to value my voice and my story as a tool that can help save lives.

I often get asked how I’ve done it all since my first diagnosis. Early on in my Stage IV journey, my oncologist, Anna Pavlick, sat me down after a rough run with my medications which I had—per usual—tried to power through. We had a conversation about the need to check in and let my doctors know about my conditions and side effects rather than just take my medications, regardless of how bad I felt.

Dr. Pavlicks message to me was this:

“It is my job to take care of and manage your cancer; your job is to live your life to the fullest.”

This changed my attitude about how to cope and live with an aggressive cancer. It has allowed me to trust in my medical team, to not worry all the time about my treatments, and to continue living my life according to my own rules and abilities. I may have cancer for the rest of my life. I can’t ignore the impact it will have on me and my body, but I can learn how to manage it and maintain life. Accept that I am not running a sprint but a marathon. I have learned to take care of myself. To eat well, do yoga, stay in bed all day Sundays if I need it, travel, read a book and spend time with the people I love. Always choose to stay positive, always live in the moment, be brave and be here.

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Skin Diaries This is Brave

This is Brave: Cassie Beisel

For me, change happened on January 24th, 2011. I will never forget those words, “You have cancer.” “How is this even possible?” I thought to myself.  As an avid outdoor enthusiast and rock climber, I was in the best shape of my life. How could I have cancer? As I would come to find out, the answer to that question was easy. As an outdoor enthusiast and someone with misinformation about base tans, I often spent many spring seasons prepping my skin in a tanning bed as a preventative measure to burning.

With the presentation of a swollen lymph node in my right arm and no primary mole, it took my doctors a month to realize that this was stage 3B melanoma and not breast cancer. I was 32 and had no clue what melanoma was but based on the doctor’s reactions, I knew that treating this was something of urgency.

Not knowing what to ask my doctors and perhaps feeling a bit naive for not know what melanoma was, I immediately took to the web, where I came across the Melanoma Research Foundation’s (MRF) website. It was here where I found an abundance of educational resources about melanoma helping me to better understand my diagnosis and treatment options. I underwent a full lymph node dissection, finding melanoma in three out of 36 lymph nodes and completed a year of interferon.

The MRF played such an important role in my journey from diagnosis to recovery. Six months after my treatment ended, I dedicated my time to fundraising for them as a volunteer. I would ride 100 miles to raise funds to help other young adults like me; hoping to make their journey a little easier through funding life-saving research.

It was three days after my ride that I would land in the hospital with acute leukemia. After a bone marrow transplant and two years of recovery, it was time for me to return to the workforce. As a young adult with two cancers and four year’s out of the workforce, I knew that returning to my everyday life in the hospitality business would be challenging for me. I just couldn’t go back to where I’d come from. My melanoma diagnosis had changed everything for me.

In 2014, I joined the Melanoma Research Foundation. Currently, I lead the organization’s advocacy efforts to mobilize advances in policy and federal funding. I also represent and engage the interest of the melanoma community and focus on partnering with industries seeking to amplify our voice.

My journey with skin cancer hasn’t ended, recently I had my Moh’s surgery to remove my third squamous cell carcinoma (the second most common form of skin cancer). I still live with the fear of a melanoma recurrence daily.

Melanoma is not “just skin cancer,” no skin cancer is “just skin cancer.” It is a big deal and it impacts the lives of millions across the globe and contributes to over tens of thousands of deaths each year. I am honored to have survived and been able to devote my career to helping those who have been impacted by this disease.

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Skin Diaries This is Brave

This is Brave: Sharon Hierlmaier

I’m not a writer, but I am a survivor and know first-hand the value of sharing your story, so I will do my best.

In January of 2006, I was at a yearly physical appointment, when my doctor noticed a spot on my back that looked suspicious. She took a biopsy of it and it tested positive for Basal Cell Carcinoma. I then started seeing a dermatologist every six months and every time I would have more basal cell removed.

My dermatologist once joked, “You have skin that loves to produce basal cell!” I’ve learned to be grateful that my skin doesn’t produce more. I’ve now had 12 basal cell spots removed, but I still feel lucky. I have a doctor who is proactive about checking and removing spots and is aware of studies taking place that could help prevent someone else from being stuck in the cycle I’m in.

I am all about preventing this in others. I am a Child Care Director at Our Lady of Grace Catholic School in Edina, MN. Since being diagnosed, I also became a grandmother. I want the families in my community and my grandchildren to be protected from the dangers of the sun.

I know full well that my skin doesn’t love the sun. As my dermatologist pointed out, my skin loves basal cell. I do love the sun though and go outside every day with long sleeves, a hat and sunscreen – no matter the weather. With the help of parents at my school, I’ve been able to make sure our children do too.

As the director of the child care program, it’s my job to care for our students year-round. In the summer we are constantly around water. Early on, I always made sure our students had sunscreen on before going outdoors – and still do. In 2011, I started noticing that a parent was sending her children to school in a swimsuit from Coolibar.

I asked her about the swimsuits, she let me know that she was a dermatologist and the suit was from Coolibar, a local company in Minneapolis. We got to talking about the need for sun protection and, with the financial support of that wonderful parent, Dr. Mimi Cho we were able to purchase rash guards for every student in our summer program. At the end of every day, I would collect the swim shirts, take them home and wash them for the next day.

Along with sunscreen on exposed skin, the kids wore them any time we were around the water. It instantly just became something we did. The norm. Even our summer staff wear the swim shirts to model sun-safe behaviors for our students. These shirts made it through seven summers. Just this year, we were able to work with Coolibar and Dr. Cho to get an entirely new set of rash guards and sunscreen donated to the school. We’re grateful to be able to continue our sun-safe practices. Being able to teach kids about the importance of sun-safety is huge.

Thanks to a parent in our community and my own personal experience, I am in a positive position to care for people in my life – my students, their families, my own family and grandchildren. I understand the risks of going out into the sun unprotected and I have the scars to prove it. I’m grateful that I can bare those scars so that our young people may not have to someday.

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This is Brave

This is Brave: Instead of Silence, Norah Chose to Be Vulnerable

We’ve all got the t-shirts that say “Be Brave”, right? Well, I’ve been listening a lot lately to Brene Brown, who says in order to be brave, we must be vulnerable.

“There is no courage without being all in. If you can do something and not feel vulnerable, it’s probably not that brave.”

Brene Brown nails it! One of the most vulnerable things we can do is talk about an illness and our health. So here I go:

In late 2016, my dermatologist informed me I had been diagnosed with a very early stage of melanoma. Early detection and surgery saved my life. At first, I thought I would keep my diagnosis silent. Why did I need to share something that made me feel and appear vulnerable?

With the help of friends, I decided to go public with my diagnosis. And what came next shocked me. There was not only an outpouring of support, but also many people thanked me. “I have not gotten a skin check in years, but after I read your story, I scheduled an appointment,” said one male executive at CBS. Another middle-aged gentleman who works at CBS showed up in our CBS This Morning studio with a big bandage on his forward and said, “Hey, Norah. Because of you, I got checked and they removed a skin cancer.”

And for my part, since my diagnosis and surgery, I’ve continued to see my dermatologist every 4-5 months for a check-up and have been much more mindful about my exposure to the sun.

By sharing our experiences, we are helping to inform one another and protect one another. This is part of our common humanity. So thank you for helping me learn that my vulnerability makes me brave, and let’s pray, will help save lives.

Want to read more? Catch up on Norah’s battle and story she shared with us from last year

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This is Brave

This is Brave: Life Post-Viral Video with Janet KJ103

Let me catch you up on my story! One day I woke up with what I thought was a whitehead pimple on the side of my nose. My only thought was that it was going to be painful when I popped it because of its location. The worst spot ever to get a pimple! I thought I got lucky when it popped all by itself; then I realized something was different. This pimple bled a lot. Three weeks later, there was still a scab, so my husband encouraged me to visit the doctor. I was pretty sure the doctor was going to laugh at me for making an appointment for a pimple. I was wrong, he took one look at it and said he was pretty sure I had skin cancer. Two months later they removed the skin cancer which turned out to be a mixture of basal and squamous cell carcinoma; the removal left a dime size hole in the side of my nose.

Now, the reconstruction begins. The hole was too big to cover with a skin graph, so I would get the dreaded forehead flap instead! The forehead flap consists of using skin from your forehead to cover the spot on your nose. Doesn’t sound that bad at first until you find out that the flap of skin then has to be fed by a vein, that hangs across your face, for three long weeks. It’s totally a sci-fi process. I’m not sure who thought this procedure up, but something tells me people weren’t jumping at the chance to be the first one to have it done.

After the three week process, they remove the vein, re-stitch your forehead and send you on your way.

The hardest part of this process is not the vein on your face. The hardest part of this process is not knowing where the next spot will be.  That’s what no one tells you about having skin cancer.  I was told that my spot was something I’ve had since I was a child.  A majority of my sun exposure came as a teen and young adult.  Every new freckle you see, you think its skin cancer.  Every time you get a pimple, you think its skin cancer. There is a part of you that lives in fear.

When you face challenges in life, the best thing you can do is share your story. Someone somewhere needs to hear that they are not alone in their fight.  My year was full of people reaching out to me who were about to have the same procedure. I loved seeing their before, during, and after photos. I love that I was able to be a light to them in their darkness because I know they will eventually be a light in someone else’s darkness.

This past year, I had the honor of working with the Stephenson Cancer Center and Miles Against Melanoma to bring free-to-the-public sunscreen dispensers to the OKC Zoo. Protecting yourself against skin cancer by using sunscreen is easy.  Sometimes we just need a simple reminder. Next time you’re out in the sun, break out some sunscreen and watch how quickly other people catch on. Sunscreen use is contagious! The only problem is… sunscreen doesn’t work if you don’t use it!

Read on to hear her STORY from last year and learn why instead of fear, Janet chose love in her journey.

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This is Brave

This is Brave: Catching Up with Brian McKenna

2018 was wonderful, unpredictable, challenging and educational. I’ve had two more surgeries and three rounds of chemo pill treatments lasting 8 weeks each. In fact, as I am writing this, I am waiting for my next 8-week round of chemo pills to arrive in the mail. I strongly believe that I am going to get through this with flying colors because of my wonderful doctors/nurses and the three F’s – faith, family and friends. I can now see a light at the end of the tunnel. When I was diagnosed with malignant melanoma in 2014, instead of asking “why me,” I said, “try me.”

I realized that my mind was going to play an integral part of the battle. When cancer returned in 2017, I was ready for it. I was of the mindset that it had picked a fight with the wrong person. Cancer can control you from day one if you’re not careful. Like life, cancer is a full-contact sport. It can cause depression, fear, anger and hopelessness. Cancer also makes you take inventory of your life and appreciate the things that you have been taking for granted for many years.

My journey has taught me the following: enjoy every day, you will be much happier if you work hard at loving yourself and being happy, surround yourself with authentic people with kind hearts, pray that others find happiness including those that wronged you, smile more than you should, accept your shortcomings and realize you will never be perfect, embrace disappointment and grow from it, be challenged, forgive others, forgive yourself, get rid of that rearview mirror and look straight ahead, be grateful, don’t be afraid to fail, get comfortable with the uncomfortable, turn the other cheek, act upon the needs of others, your true worth is the effect you have on others, count your blessings, tell someone you love them before the bricks run out of road, realize that every relationship (good or bad) happened for a reason and that you are exactly where God wants you to be today.

All of this has become so much more apparent to me during my cancer journey. I’m so blessed to have the St. Louis community surrounding me with prayers, love and support. I am humbled and grateful.

Life gave Brian the sourest of lemons and he turned them into the sweetest of lemonades by starting a non-profit of his own that specializes in helping people that are in need and spreading good vibes through the world.

My goal every day is to make a difference in this world and be the best Brian McKenna that I can be! I fail on many days, but that’s just part of the journey. Please get regular skin checkups and never stop dreaming.

Your Vibe Attracts Your Tribe!

To see Brian’s story from last year’s campaign, visit HERE

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This is Brave

This is Brave: Bethany Shows Us Her True Strength

This last year for me has brought many changes and thankfully… Progress.

Health-wise, I’ve had a few little health scares since I wrote back in May 2018, but nothing serious or remotely life-threatening. Thank goodness! First, I had a staging scan to make sure all the immunotherapy (yervoy) infusions I get every three months are doing their job. It was during this scan that they found something on my liver. After a PET scan, the growth on my liver was determined to be nothing but a cyst and not metabolizing. The PET did reveal some reactivity in the lymph nodes on my neck. Which can mean bad news for me as well, but after a neck sonogram and a closer look it was determined that I just have Lymphedema (lymph node damage from radiation), which again was a huge relief.

Honestly, this is par for the course when you are in treatment for cancer. The closer you look the more things you find and if you’re lucky, it’s nothing. It’s a big mental weight, but worrying about what the results will be will not change the outcome. The only thing all the worry and anxiety does is ruin today.

In addition to tests, my face has changed yet again… but in the most positive way! I’ve had a few more plastic surgeries to fill in the dent on my forehead made by the removal of my melanoma. I’m grateful for this leap forward. I’ll be nearing the end of treatment soon and should be getting my last infusion this fall.

Emotionally, (because the emotional side of melanoma often feels bigger than the physical) I’ve had quite a year. In the midst of all of these tests and surgeries, my husband served me with a divorce. I was not surprised. Cancer is tough and brings out the best and worst in people. He was not capable of giving me the compassion I needed, and I was unable to overlook his shortcoming. I hope this shift gives us both the opportunity to find happiness.

My girls have been my inspiration and driving force. I have had to dig deep to start a new, independent life. In a few months, I sold our house, restarted my career (which I had left seven years ago), and moved into an apartment. Through all this change, the girls have bravely accepted each step-in stride. I am beyond proud of them.

Another one of my saving graces was advocacy. Thanks to my connections and my Melanoma Photo Diary on Facebook, many opportunities to continue raising awareness for melanoma and other skin cancers have opened up for me:

  1. The Shade Project invited me to speak at their annual Down and Derby fundraiser. SUCH an honor.
  2. Meredith’s Mission for Melanoma invited me to speak at their Gala to benefit the M.D. Anderson Cancer Center.
  3. AND Coolibar and the Melanoma Research Foundation reached back out for This is Brave!

Moving forward into 2019 and beyond, my girls and I plan to continue supporting advocacy and awareness as much as we can. While I’m wrapping up my treatment with my last two infusions and the reconstruction on my face by December, our drive to support protection, prevention and early detection will keep going. Despite the “hardships” that I may have gone through since diagnosis, I’m grateful for the strength I have and my ability to support others.

To catch up on Bethany’s battle and story from last year, visit HERE.

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This is Brave

This is Brave: How Judy Lives the Mission Every Day

It’s been nearly a year since I wrote a blog for Coolibar’s “This is Brave” campaign. A lot has happened in the last year.  In that years’ time, an estimated 9,500 people were diagnosed every day with skin cancer.  An estimated 9,300 people died from melanoma.  And skin cancer remains the most common cancer in the United States. These are sobering statistics.

Over the last year, I’ve continued to not only be a patient but also a skin cancer awareness advocate.  I’ve had additional areas of skin cancer (squamous cell and basal cell) that needed treatment.  I know what it’s like to have the anxiety of wondering whether a suspicious area is skin cancer, and I know the feeling of wishing skin cancer would just go away. Unfortunately, for me, it won’t.

I also know the feeling that skin cancer can be a lonely cancer. That’s why I will continue to share my story, and I will continue to talk with and encourage others who are battling skin cancer or who are supporting loved ones in their battle. I continue to write articles for a skin cancer site, and I also moderate for them. In doing this, I’ve learned that far too many people don’t give much thought to skin cancer until it affects them or someone they love. We need to change this – especially given that many skin cancers can be prevented.

There’s so much work to be done. I want to do more. Indoor tanning continues to remain a big business in the United States. Insurance companies don’t yet cover an annual skin exam as preventative care. Too many people continue to not realize the consequences of tanning beds and over-exposure to the sun. I did a lot of damage to my skin when I was younger, as did many people.  My hope is that the more awareness we can raise, other people won’t make the same mistakes I did.  Now we know better, and now we can do better.

To see Judy’s story with us from last year, visit HERE.

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Skin Diaries

A Finish Line She’ll Never Forget

As a 27-year-old female, I never would have thought of melanoma as a possibility, but I’ve since learned that melanoma is one of the most common cancers in young adults.

In September of 2018, I went to the dermatologist for the first time in over 8 years. I had scheduled an appointment to look into getting a skin tag removed. My purpose for the visit quickly shifted gears as the dermatologist took a scan of my body and noticed an unusual spot on my back. I walked out of Tufts Medical Center that day waiting on biopsy results. Not me, I thought. Melanoma was the furthest thing from my mind.

I found out a few days later that the mole tested positive for melanoma in situ. Fortunately, I soon learned this was the earliest and best stage to catch melanoma. The dermatologist insisted I come in that week for surgery to fully remove the mole. Now healthy, I’m forever grateful to the dermatology team at Tufts Medical Center.

Three weeks before my September surgery, I had signed up to run my second marathon. I ran my first marathon in October of 2017, the Eversource Hartford, Connecticut Marathon. Originally from Connecticut, it was memorable to be able to complete my first marathon at home with close family and friends cheering me on. After crossing the finish line, I was immediately hooked. Now, a year later, I was planning to run on October 7th, 2018 in the Bank of America Chicago Marathon. I had trained all the way up to 18 miles and raised over $1,100 for the American Heart Association with the help of some amazing family and friends. Unfortunately, the recovery period after surgery doesn’t allow for strenuous activity. I observed the 2018 Bank of America Chicago Marathon from the sidelines.

As I healed, I began to research charities and marathons that I could participate in next. A close friend showed me IMPACT Melanoma, a national non-profit organization that provides education, prevention and support for skin cancer. Not only was this an organization that I was truly passionate about, they had a team for the 2019 Boston Marathon.

Boston has been my home since I went to college in 2010. I have cheered on many runners through the years with hopes to one day cross the finish line myself. Knowing that the Boston Marathon is one of the greatest and most prestigious races in the world, it has always been on my bucket list. I couldn’t think of a more fitting organization or race to participate in. I quickly filled out an application to join IMPACT Melanoma’s team for the 2019 Boston Marathon on April 15th, 2019.

I was grateful to be accepted by Team IMPACT in December. Since joining the team, I have raised over $9,000 towards efforts to reduce the risk of melanoma. My diagnosis may have forced me to sit on the sidelines for the 2018 Bank of America Marathon, but I knew my journey wouldn’t end in Chicago. Raising money to support the mission of IMPACT melanoma by running 26.2 miles in a city that’s grown to be my home is an honor. Crossing the finish line at the 2019 Boston Marathon will be nothing short of an indescribable moment.

Being a part of IMPACT Melanoma has allowed me to spread awareness of the importance of skin safety. I’m extremely grateful for the opportunity and hope that my story and efforts can help to prevent cases like mine.

If you would like to donate to Morgan’s efforts, visit HERE.

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Live Wisely

Hawaii Bans Most Sunscreens. How Do I Cover Up?

It’s no secret that the coral reefs of the world are diminishing. From climate change to overfishing, one of Earth’s strongest ecosystems is being destroyed by countless factors. And just to make matters worse, a recently discovered threat may top the list – sunscreen.

For decades, research has proven the vitalness behind basic sunscreen usage. According to the Skin Cancer Foundation, one in five Americans will develop some form of skin cancer in their lifetime. With that statistic alone, there’s no denying the importance, but what environmental cost are we willing to pay?

Should I Not Use Sunscreen Anymore?

To clarify a bit, not all sunscreens are harmful. The two active ingredients in question, oxybenzone and octinoxate, are the main perpetrators and have been linked directly to increased bleaching, genetic damage to the reefs and it’s marine organisms and ultimately irreversible death to the coral. In fact, Hawaii, one of the world’s most popular tourist areas known for its coral reefs, signed the country’s first bill banning sunscreens containing the two destructive chemicals starting January 1st, 2021. The island’s ground-breaking decision even influenced the Western Pacific nation of Palau to take action and many others are expected to join the movement.

So How Am I to Cover Up?

The bills don’t take effect for a couple years but transitioning now will greatly benefit the coral reefs. Although oxybenzone and octinoxate are two of the most common active ingredients found in sunscreens, there are other ingredients that are dermatologist recommended and considered environmentally safe by researchers.

Dr. Monica Scheel, a board-certified dermatologist in Kona, stated that, “Your best sun protection ingredients are zinc oxide and titanium dioxide.” Also, remember when searching to look for products that are “non-nano”, such as Badger, Coola and MDSolarSciences, because nanoparticles can be consumed by the corals and ultimately cause death.

Along with seeking shade whenever possible and limiting sun exposure, choosing UPF 50+ clothing is also a highly recommended move. Dr. Henry W. Lim, the president of the American Academy of Dermatology, considers UPF 50+ clothing just as effective as sunscreen.

For the environmental specialists, it’s simple. Craig Downs, the executive director of the Haereticus Environmental Laboratory that has studied the damage caused by sunscreen on the coral reefs, said, “For women in a bikini, 85% of her body will be covered in sunscreen. She can reduce that by 50% just by wearing a sun shirt.”

Obviously, sunscreen isn’t the only detrimental force attacking the coral reefs of the world, but it is one of the most controllable. That reasoning alone should be more than enough to encourage us all to reevaluate our approach to protecting ourselves in the sun. Together, we can protect the coral reefs.

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