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The Race of a Lifetime

At 26 years old, Grace Pophal is a daughter, sister, niece, partner and friend. A lifelong competitive swimmer, she entered Ohio State University in the fall of 2010 as a Division 1 swimmer with a lifetime of possibilities ahead of her.

During her time at school, she struggled more than ever and no one could figure out why. In October of 2015, they received the answer. After experiencing prolonged and severe back pain with migraines, a doctor’s appointment was made and x-rays were performed. Within a week, Grace was diagnosed with Stage 4 Metastatic Melanoma. Five tumors were found in her brain, while her back pain was caused by a tumor on her lung so massive that it was putting significant pressure on her spinal cord. Tumors were also found in seven of her other organs. Subsequent treatment with radiation caused swelling, and Grace underwent emergency brain surgery to remove the two largest tumors causing pressure on her brain. By November 2015, Grace’s future looked hazy.

Moving forward, Grace is still here and continues to fight every single day. She was treated with an aggressive form of targeting pills and has been hospitalized several times with side effects, but her tumors have all been significantly reduced in size. A successful second brain surgery was performed in June 2016 and she would shortly after begin her first course of Immunotherapy treatment.

Grace’s Interview with WKYC

Her journey has been filled with blood, tears, heartache, celebration, a pup named “Otis”, hospital socks, ice cream binges and too many body scans to count; and there is still a long way to go.

Today, Grace has no active tumors in her brain, is a yoga teacher and receives immunotherapy treatment every other week. She’s faced every challenge this diagnosis has given her with unbelievable courage, strength, humor and determination, and continues to fight for her future.

Grace has also been working on fundraising for Melanoma research and was a big part of the Miles for Melanoma 5K Walk and Run to be hosted in Cleveland at Edgewood Park!

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This is Brave

This is Brave: Coolibar Inc.

The reality is, one in five Americans will develop skin cancer by the age of 70 and one person dies of melanoma every hour. These statistics are harrowing.

At Coolibar, we are DETERMINED to change the skin cancer and melanoma statistics. On Melanoma Monday, May 7th, Coolibar will reveal a limited-run tee shirt in support of our mission to keep the world safe from sun damage. The proceeds from the sale of this commemorative tee shirt, inspired by a 10-year child impacted by a melanoma diagnosis, will go directly to the Melanoma Research Foundation in support of research, education and advocacy.

After a skin cancer or melanoma diagnosis, life alters dramatically for the individual and everyone around them. It takes courage, determination, and advocacy to elevate the fight against this terrible disease in the hope of one day extinguishing it. For the month of May, we have joined forces with some of the true heroes in this fight, who have bravely come forward to share their real-life journeys as skin cancer and melanoma warriors. Depicted in photos and written in their own words, each story brings the reality of this immoderate disease to life, utilizing the most powerful insight.

We are honored and humbled to share these stories with you to raise awareness and encourage you to join us in the fight.

Together we can change the statistics. Be DETERMINED.

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This is Brave

This is Brave: Beth Allgaier

It takes some time to settle into a melanoma diagnosis.

In early 2016, my father had extensive melanoma surgery, which prompted me to schedule a second full body skin exam within the year.  During my exam, the doctor froze a few “spots”, decided to biopsy a few others, and advised me to keep an eye on a small freckle he discovered on my abdomen.  Something about this “small freckle”, and my dad’s diagnosis, alerted me to do more than keep an eye on it.  I urged my doctor to do a biopsy of this “small freckle”.

One week later, I received the call and it was Stage 1A melanoma.  We caught it early.  With the news of my diagnosis, I was instantly overcome with emotion.  I felt totally out-of-control and paralyzed with fear of the known and the unknown.   Thoughts whirled in my head, “I know melanoma is dangerous, and yet, I don’t know how bad mine is? Will it keep coming back?  Will it become something I cannot stop?  Can I still be outside when it’s sunny?” Anxiety and fear suddenly controlled my life.

I learned everything I could about skin cancer and melanoma for comfort and my own peace of mind.  It was my way of controlling a path I had not chosen.  Educating myself with information and accepting the care and advice of skilled and experienced healthcare professionals, like Dr. Atkins at Georgetown University Lombardi Cancer Center, empowered me.  I felt armed and ready to embrace my diagnosis.

Melanoma is not a choice, but living with a positive attitude is.  I parlayed my diagnosis into a career with the Melanoma Research Foundation, where I am passionate about the work we do and as a patient, I know first-hand the difference this organization makes.  In addition, every morning I journal the 3 things I am grateful for and the 3 things that will make my day great. It’s amazing how much this simple routine launches my day in a good direction and reinforces my mind set on gratitude.

I will continue to research melanoma, but it will never consume me or compromise my positivity. I will always rely on the best specialists available to support my treatment and continue to be proactive with my frequent skin exams and sun protection practices.  Being positive makes me who I am, not melanoma.

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Experts Say

Are You Still at Risk of Skin Cancer During the Winter?

With the warmer weather behind us, it must be time to put away the SPF and your favorite UPF 50+ clothing, right? Not so fast. Your skin needs protection during the entire year (yes, even during the very cold winter months) in order to prevent damage to your skin from UVA and UVB rays that can lead to skin cancer.

You might think that skin cancer will never happen to you because it only happens to people who use tanning beds or get sunburns frequently and badly. Skin cancer happens more often than you would think. All sun exposure poses a risk to your skin even during the winter months. In fact, about 86 percent of melanomas and 90 percent of non-melanoma skin cancers are associated with exposure to the sun’s ultraviolet (UV) rays. In addition, the sun’s UV rays are also responsible for 90 percent of the visible changes commonly attributed to skin aging including wrinkles, leathery skin and brown spots.

People can forget that snow plays a part in how effective UVA and UVB rays are when they hit your skin. Snow reflects up to 80 percent of the sun’s ultraviolet (UV) rays. It’s a lot! As a result, the same rays can reach the skin twice. Additionally, up to 80 percent of UV rays burn right through the clouds. Be aware that the sun can still be strong on those cloudy days when the sun reflects off the snow.

Skiers and snowboarders are at an even greater risk, as these sports take place at a higher altitude, where the thinner atmosphere absorbs less UV radiation. Sun exposure increases four to five percent with every 1,000 feet above sea level. Both snow and strong wind can wear away sunscreen and reduce its effectiveness, so you have to take extra precautions.

Treat your skin like you would if you were going to the beach on a bright sunny day. Wear your UPF 50+ clothing, wear sunscreen, re-apply often and protect your eyes.

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Live Wisely

How to Share Your Skin Cancer Story to Help Others

It’s no secret that personal experience carries more weight than any statistical fact ever will. You could be told repeatedly that you should wear sunscreen, have regular skin checkups and upgrade your clothing to UV protected fabrics, but it doesn’t hold the same true meaning as having someone explain their own painful journey. Over the past 30 years, more individuals have been diagnosed with skin cancer than all other cancers combined and there are many ways your story can educate change.

  • Speak openly with family and friends

For many, the journey to open-up can be difficult, but this is the opportunity to help prevent your loved ones from being diagnosed. Emotionally, a cancer diagnosis affects everyone, so words of advice and tips hold value to the people closest to you. Along with the educational aspect, storytelling benefits therapeutically. No experience is the same, but for the most timid of survivors, putting your story into words helps you as much as the ones you love.

  • Share your story online

Remember the desperate searching for answers after your diagnosis? Organizations such as Melanoma Research Foundation and Skin Cancer Foundation want to give you a platform to share your personal story. Regardless of the current state of your skin cancer, your shared experience can too enlighten and support a diagnosed patient with similar circumstances.

  • Get out of your comfort zone

Some people were born courageous; others may have courage thrust upon them. This past May, several brave individuals shared their skin cancer battles in our Let’s Get Gross Campaign—like Judy, a Skin Cancer Warrior, pictured in this blog. There’s no denying images and scars can be difficult to look at, but they are visual cues and awareness-builders of UV over-exposure. Instead of hiding the blemishes, positively take advantage of your social media presence and bravely show the true dark side of skin cancer.

Regardless of your path, remember that you’re in the unique role of educator. With your personal story, you may be able to help prevent skin cancer for people across the globe.

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Expert Rx Success Stories Wellness Warriors

Guest Post: A Call to Action from a Skin Cancer Survivor

Megan Ramey

NOTE: This post by Megan Ramey first appeared July 29 on Cancer Candor, a blog from Chris Hanson, President, American Cancer Society Cancer Action Network (ACS CAN). It appeared on the same day that the US Surgeon General released a call to action to prevent skin cancer in which he called the disease a major public health problem. “I wanted impress upon my readers why it is so important that our nation has an action plan for dealing with this devastating cancer by sharing Megan’s powerful story,” Mr. Hanson said.

My name is Megan Ramey and I was diagnosed with stage III melanoma in 2010, just weeks before my 21st birthday. With blonde hair, blue eyes and fair skin I am the walking definition of someone who should take extra precautions when it comes to UV exposure. Four years post diagnosis I look back on the choices I made and feel a large amount of regret for not being cautious enough. Melanoma is a unique cancer in that most cases directly results from our behavior. We can choose to protect ourselves in the sun and we can choose to stay away from tanning beds. I admit I did not take the risks seriously.

Growing up in Minnesota my family and I cherished our beautiful summers.  Whether we were at the lake or by my family pool we were outside from sun up to sun down. I used sunscreen here and there but not nearly enough to prevent several painful sunburns over the years. When I reached high school, I began using tanning beds before school dances, vacations and figure skating competitions. I thought that tanning beds were a safer way to obtain a tan. In college, going to the tanning salon was a common activity amongst my friends. Being tan was considered attractive.  Everyone was doing it. When you are young, you don’t think about the consequences of your actions and how they can impact your future. Had I been better educated about skin cancer (specifically melanoma) and taken the warnings seriously, my life could very well be entirely different from what is today.

When I was first diagnosed with melanoma, the summer between my junior and senior year of college became a whirlwind of scans, surgeries, oncology visits and one month of high dose immune building chemotherapy (interferon). Luckily all scans since my initial diagnosis have come back NED (or no evidence of disease), meaning I have no active cancer cells to worry about at the moment. Melanoma is tricky. Even if you are lucky enough to be labeled NED, it could reoccur at any moment. Knowing this, I made a choice to complete two years of low dose interferon in hopes that the medication will continue to help my immune system ward off active melanoma cells. Currently, I live my life in 6 month increments never knowing when the next scan will show trouble. A recurrence of melanoma is never far from my mind, and one of my biggest fears. My life at 25 is unlike anything that I could have imagined.

Melanoma awareness is an important part of my life. I am part of a local non-profit group called Melanoma Awareness Minnesota. This group is active in the community, participating in health fairs, expos and presenting to local high school students the dangers of melanoma. I recently had the opportunity to work with the ACS CAN here in Minnesota to pass the tanning legislation prohibiting minors from using commercial tanning beds. I enjoy sharing my story with anyone who will listen. When it comes to melanoma, education is key! Knowledge saves lives. The CDC and Surgeon General released today a call to action on skin cancer. Their support and assistance sends a strong message to the general public about just how dangerous and prevalent skin cancer can be. The numbers are staggering; millions of people every year are being diagnosed with melanoma. Something needs to change and I think this call to action is going to be a significant step in the right direction!

Megan Ramey is a courageous ACS CAN volunteer from Minnesota. At age 21, after several years of indoor tanning, Megan was diagnosed with melanoma, the deadliest form of skin cancer. Megan bravely shares her story with teens with the hope that they will avoid indoor tanning salons and protect their skin from ultraviolet (UV) exposure. 

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Expert Rx Sun Protection Clothing Sunscreens and Lotions Wear Sun Protection

Concluding African American History Month – Or Not

All this month we’ve been reminding people that African Americans (and others with naturally dark skin) can get skin cancer, too. And, as African American History Month concludes, we at Coolibar would like to ensure that the flow of information about cancer and skin of color does not.

Skin cancer – particularly melanoma – has been shown to be much deadlier to African Americans than for Caucasians. The Skin Cancer Foundation points out that 52 percent of non-Hispanic black patients receive an initial diagnosis of advanced stage melanoma, compared to 16 percent of non-Hispanic white patients.

There are several reasons for this, including that squamous cell carcinoma (SCC), the most common skin cancer in African Americans, tends to be more aggressive and can carry up to a 40% chance of spreading.

But many of us also still believe that African American skin, with its higher melanin content, is just highly resistant to developing cancer caused by the sun. African Americans simply tend to seek treatment much later because skin cancer isn’t top of mind.

In fact, typical African American skin protects at the equivalent of a 13.4 SPF sunscreen. (SPF stands for Sun Protection Factor, and it mostly measures UVB radiation that causes darkening or burning on the surface of the skin). UPF, or Ultraviolet Protection Factor, measures UVB and UVA radiation. UVA penetrates deeply into the skin and is, by far, the most prevalent of the sun’s radiation.

Effective sun protection starts at UPF 30, and should ideally be UPF 50 or higher.

There is more to be repeated, remembered and learned; for example, the Skin Cancer Foundation has some excellent facts about ethnicity and the dangers of the sun.

African American History Month may come to an end. But the effort to defeat skin cancer continues year round!

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SunAWARE

Three More States Ban Tanning Beds for Minors

Because skin cancer rates continue to rise among young adults – a group previously unlikely to be diagnosed – states are acting on convincing evidence that indoor tanning is a significant factor.  In 2013, following a number of other states, Illinois, Nevada, and Texas enacted legislation to block access to indoor tanning for minors. This is a trend we hope will eventually be rolled out across all states.

In June, Texas and Nevada became the fourth and fifth U.S. states to pass laws prohibiting anyone under 18 from indoor tanning; in August, Illinois became the sixth.

These new laws take effect as significant scientific evidence links indoor tanning with melanoma and other skin cancers. According to figures compiled by the Skin Cancer Foundation, of melanoma cases among 18-to-29-year-olds who had tanned indoors, 76 percent were attributable to tanning bed use. And more than 170,000 cases of non-melanoma skin cancer in the U.S. each year are associated with indoor tanning.

Along with the three states to entirely ban indoor tanning among minors in 2013, three others passed legislation regulating the use of indoor tanning equipment. In Oregon, anyone under 18 is prohibited from indoor tanning without a prescription, and in Connecticut and New Jersey indoor tanning is prohibited for anyone under age 17,  This is in addition to other states that require parental consent, or prohibit indoor tanning for those under 14.

The American Academy of Dermatology cites studies showing nearly 28 million Americans – including 2.3 million teens—use indoor tanning beds each year. However, six states have now banned indoor tanning for minors since the beginning of 2012, and some 29 additional states have at least one legislative bill under consideration regarding the regulation or prohibition of indoor tanning for minors in 2014. And the U.S. Food and Drug Administration has proposed that the classification for sunlamps and tanning beds be raised to a Class II level, which institutes stricter regulations to protect public health.

Make your voice heard.

If you believe indoor tanning devices should receive the maximum amount of regulation, which more closely matches the health risks of these harmful devices, write a letter of support to your state elected officials urging the FDA to regulate tanning beds and ban those under 18 from using them. You can also email The Skin Cancer Foundation at advocacy@skincancer.org. The Foundation will compile all emails of support and send them to the FDA Commissioner Margaret Hamburg’s office.

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SunAWARE Wellness Warriors

SavageMan Competitors Brave the Ultimate Triathlon Course for Melanoma Awareness

The 7th annual “Win-The-Fight” SavageMan Triathlon Festival at the Deep Creek Lake State Park in western Maryland attracted nearly 1100 elite athletes from 30 states and several countries including Great Britain, Australia and New Zealand on September 14, 2013. Athletes competed for more than a medal as the event raised vital funds for the Joanna M. Nicolay Melanoma Foundation, a voice for melanoma prevention, detection, care and cure.

According to the Foundation’s President, Greg Safko, “The ‘Win-The-Fight’ SavageMan Triathlon Festival has garnered much international attention as arguably the world’s toughest and most savage triathlon at the half Ironman distance.” Besides attracting the world’s most accomplished triathletes to test themselves and compete in the “#1 Hardest Race on Earth!” as rated by Triathlete magazine, the event also informed athletes, spectators and donors that melanoma skin cancer is the most common cancer among young adults ages 25 to 29, and if not prevented or detected early, is extremely formidable. “We’re very proud that our signature “Win-The-Fight” fundraising event for the Foundation is supported by a multitude of athletes, team members and sponsors such as Coolibar, to further the JMNMF mission of melanoma education, advocacy and research,” said Safko.

JMNMF President, Greg Safko (right, in blue) cheers on fundraiser and Team Win-The-Fight member, Mark Himelfarb of Lititz, PA, up the Westernport “Wall”.

The SavageMan 70.0 race features a 1.2-mile swim in Deep Creek Lake, Maryland’s largest freshwater lake, followed by the crown jewel bike stage featuring an over 6,000 foot vertical climb including the most savage ascent in all of triathlon – the Westernport “Wall”. After a 55.6 mile bike-ride, competitors run 13.1 miles on a lakeside trail and end the race with a panoramic lake finish.

Is SavageMan in your future?

U.S. Olympian Susan Williams (pictured) and 6x Ironman World Champion Dave Scott are notable finishers under the SavageMan banner – with D. Scott autographing all 1st place awards for each of seven years of the race’s history to support the JMNMF.
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Expert Rx

Getting Proactive about Breast Cancer Prevention

“An ounce of prevention is worth a pound of cure.” Remembering this famous quote by Benjamin Franklin is a great way to head into October, which is officially National Breast Cancer Awareness Month. Except for skin cancers, breast cancer is the most common cancer in women, but it can be successfully treated when found early. While this month is dedicated to raising funds for lifesaving research, it’s also furthering awareness so more women (and men) can detect breast cancer early on, and even better, lead a healthy, preventative lifestyle .

Know your risk. Being a woman, the older you get, the more your risk increases. Genetics also play a role as about 5% to 10% of breast cancer cases are thought to be hereditary according to the American Cancer Society. The most common cause of hereditary breast cancer is an inherited mutation in the BRCA1 and BRCA2 genes. You can learn more about your risk by speaking with your family about medical histories along with your physician. Genetic testing is also an option, but should carefully be considered.

Have a professional exam. If you’re at average risk, the Susan G. Komen Foundation urges women to have a professional screening every three years starting at age twenty, and every year starting at age 40. Routine professional exams are crucial in detecting breast cancers in early stages. Talking with your healthcare team will also help determine when you should be seen.

Listen to your body, perform a self-check. While the signs may differ for every woman, if something new appears: lump, swelling, warmth, redness, dimpling, chronic pain or anything out of the ordinary, see your doctor immediately. Get to know what’s normal for you.

Create good habits. Leading a healthy lifestyle is the most natural way to reduce cancer risk. The Mayo Clinic suggests limiting alcohol intake to no more than one drink a day, and refraining from smoking. Also, work to stay within your target weight through a diet rich in fruits and vegetables and exercise. The Department of Health and Human Services recommends at least 150 minutes a week of moderate aerobic activity or 75 minutes of vigorous aerobic activity weekly, plus strength training at least twice a week.

Avoid or limit exposure to chemical and environmental factors. Avoid exposure to radiation such as medical imaging and environmental pollution like gasoline fumes and vehicle exhaust. Limit sun exposure and avoiding tanning beds, as both can lead to skin cancer. If you’ve had either melanoma, or breast cancer, you’re at increased risk to developing the other according to a study cited by the Skin Cancer Foundation. Check your skin regularly for abnormal moles/spots. Wearing sun protective clothing, hats, sunscreen and sunglasses will also reduce your risk.

Get your pink on, share this message and help raise awareness!

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