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Together We Will

Together We Will… Inspire Action

Susan Reynolds, Auction Chair for the Melanoma Research Foundation, along with her kids.

I was sitting next to my son Ryan’s bed in the Pediatric ICU and in walked my sister, Paula, with the guy she had recently started dating. His name was Michael. I had this really cool mobile in all different primary-colored geometric shapes that I wanted to hang above Ryan’s hospital bed but couldn’t figure out how to do it. So Michael took control and got it done right then and there.  At the time, Ryan was in a paralytic, sedated state, so Michael knew that hanging the mobile was really more for my benefit than for his, so that I could feel like I was doing something to help my very sick son. That day, I witnessed true kindness and had my first real glimpse of Michael’s gentle heart and spirit. That was 22 years ago.

Michael had been diagnosed with melanoma when he was in his early 20’s.  When he and Paula got married, we knew that he was managing each new melanoma occurrence with courage and determination. There was never an ounce of self-pity… he just did what needed to be done. He became a dad to two beautiful boys, Jack and Andrew who, along with my sister, were the lights of his life. He was an amazingly loving and involved father, and when he died six years ago, we all lost one of the best people to ever come into our lives and our hearts.

Paula and Michael along with their boys, Jack and Andrew.

Jack is now 19 and Andrew 17. Jack has been an amazing big brother to Andrew, who has Down Syndrome, and my sister has been an extraordinary mom! Jack and Andrew are gifts that Michael left with us. At a young age, they faced the worst kind of loss, yet they have embraced life and challenges just like their dad did. They inspire me every single day. Both Jack and Andrew are genetically predisposed to developing melanoma, so when Michael lost his battle with this horrible cancer, I became determined to help in some way. This is what led me to the Melanoma Research Foundation.

I took on the role of Auction Chair this year for the first time because I wanted to do more to help with fundraising. My dear friends here in Summit, Tom and Cathie Westdyk, are dealing with their own personal story with melanoma, as their son, Christopher, was diagnosed with melanoma five years ago at the age of 16. He now is a stage four survivor at the age of 21. He is going to be a senior at Notre Dame, is studying for his MCAT’s and is training to run the NYC marathon this November. Talk about an inspiration! While I was nervous about committing to taking on chairing the auction because I didn’t want to fail or disappoint (I can be a bit of a perfectionist), all I needed to do was envision the faces of all of the people I love who have faced melanoma in some way and thought how could I NOT try to do more? I knew it would be challenging and I didn’t know what to expect, but the majority of people and businesses to whom I have reached out have been so incredibly generous and supportive!  To know that there are so many kind, caring and compassionate people in this world has lifted my spirit and makes me smile every single day.

To close the circle on the beginning of my story, I knew Michael for only about four months when my son, Ryan, died. Yet, his presence probably had the greatest impact on me. My sister loved Ryan as if he was her own and was as broken-hearted as I was when Ryan passed. Michael, with his strength and love, held onto Paula from that day forward and never let her go. In fact, he held onto all of us in some way. For that and for my nephews, I will always be grateful and will always try to do something that makes a difference. Thankfully, the MRF has given me the opportunity to do it.

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Together We Will

Together We Will: Kyleigh Lipira

Kyleigh Lipira (Left), Melanoma Research Foundation CEO, with Norah O’Donnell, co-anchor of CBS This Morning

The New York Wings of Hope for Melanoma gala started off 17 years ago as a small dinner among friends. It was an opportunity to bring together a group of people who were passionate about finding a cure for melanoma and recognize a medical expert in the field who would bring us closer to this goal. Even in the humble beginnings of that first year, we raised $100,000! The physician honoree shared with the group the most recent updates on research and encouraged them to continue their support of the MRF until we have better treatment outcomes for ALL patients.

Today, the NYC Wings of Hope for Melanoma gala brings together more than 600 people and raises over $1,000,000 to fund melanoma research, support programs for patients and families and promote advocacy initiatives for the entire melanoma community. We honor dedicated clinicians and nurses, courageous patients and caregivers and generous corporate partners that are driving us ever closer to a cure. Together we have a shared vision — hope and a future without melanoma.

Moving us towards a cure takes a village of passionate individuals from across the United States. MRF community members raise money at bake sales and other CommUNITY Fundraising events, participate in Miles for Melanoma 5k run/walks, bring the voice of the melanoma community to Capitol Hill at our annual Advocacy Summit & Hill Day, and so much more.  We hope the more than one million Americans who are impacted by this disease realize that their dollars matter and their voice is heard. Without them, the enduring mission of the MRF would not be possible and we are immensely grateful for the generous and creative ways our community shows their support.  Together, we will cure melanoma.

 

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This is Brave

This is Brave: Coolibar Inc.

CEO Kendra Reichenau and Coolibar are DETERMINED to change the statistics

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.

On Melanoma Monday, May 7th, we revealed 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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Skin Diaries This is Brave

This is Brave: Norah O’Donnell

I never thought I would hear the words that I had been diagnosed with melanoma, the deadliest form of skin cancer. And I admit, the first thing I did was cry. And then, I felt really sorry for myself. It took some time but then I realized that as a wife and a mother, I had to be strong.

But it is difficult to be strong when one feels incredibly vulnerable. My diagnosis was the first time I confronted my own mortality. It was also the first time I think my children did as well.

“So, wait, you have cancer?” asked my 8-year-old daughter Riley.

“Yes, but we are going to cut it out!” I replied optimistically.

“Is there any chance you can die from the surgery?” asked my 9-year-old son Henry

“I’m absolutely not going to die,” I assured him. “I mean, eventually I will. But not from this surgery.” When I left my daughter’s bedroom I felt horrible for sharing with them that I was having a relatively minor surgery. There was no need for me to worry them.

But I was scared and, perhaps selfishly, really appreciated their deep concern. Over the next few months after the surgery, my daughters, Riley and Grace, took turns at putting a healing ointment on the scar on my back, which I couldn’t reach.

“Oh mom, it looks soooo much better today,” my darling Riley would say, providing such positive feedback.

My dermatologist, Dr. Elizabeth Hale, made the diagnosis early. I had the surgery January 2017, which included a 3-inch incision and about 25 stitches. The scar has healed, but is still quite visible. It is a reminder that early detection saves lives.

Part of my preventative care now means that I return to Dr. Hale every three to four months for full-body checks to make sure there’s nothing out of the ordinary. Each visit requires the strength to confront the scary possibility that she will find another malignant mole.

The reality is that I can prevent a truly devastating diagnosis now with frequent check-ups. The harder truth I’ve come to learn is that I could have prevented the cancer altogether.

“More people develop skin cancer because of tanning than develop lung cancer because of smoking,” Dr. Hale told me. Just think about that.

Well, I am doing more than just thinking about it. I’m telling my children that while skin cancer is the most common form of cancer, it is also the most preventable.

I grew up in San Antonio, Texas, where jumping in the pool wasn’t just leisurable, it was one of the only ways to cool off! With the temperature pushing 100 degrees in the summer, we spent hours in the pool, many times without sunscreen. In high school, I would visit a tanning salon during the winter. I confessed this history to Dr. Hale who told me, “People that indoor tan before the age of 35 years have a 75% increased chance of melanoma.”

I know I made some bad choices. Those attempts to get a tan likely led to my cancer. But by sharing this with my children and others, I hope that my story can help all of us learn some valuable lessons and have the strength to embrace prevention.

Skin Cancer Facts can be found at http://www.skincancer.org/skin-cancer-information/skin-cancer-facts

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Skin Diaries This is Brave

This is Brave: Bethany Greenway

The word I’ve chosen to represent my melanoma journey is Aware.

My name is Bethany Greenway, I’m a stay at home mom to two amazing little girls. I was diagnosed with stage 3a melanoma August 2016. I wasn’t surprised about the diagnosis because my mom had melanoma at my age, it was just my body’s genetic timer going off.

I had a spot on my forehead that looked like a light brown liver spot, it made its appearance while I was pregnant with my second daughter. I went for my annual skin check when my little one was 9 months old, and got the all clear. I thought nothing of the spot and chalked it up to hormones until it grew a mole and the mole started to ache.

I went to see my dermatologist who sent me to a plastic surgeon for a biopsy. Three weeks later I got the call from my surgeon, I had two types of melanoma: desmoplastic melanoma, which is very rare, and regular melanoma surrounding it.

At this point, I’ve had two surgeries to remove the cancer and the nearest lymph node removed, which tested positive for melanoma and that put me at stage 3a. With melanoma being such an aggressive cancer, I had to begin treatment to prevent recurrence. I started immunotherapy October 4, 2016 and won’t be done with it until October 2019. The type of immunotherapy I’m on is called Yervoy, and it has a whole host of nasty side effects. Reading the list of them is worse than the drug ads you see on tv. I’ve been lucky in that department, so far, just fatigue and itchy rashes for me. After my first four infusions, I did radiation therapy for six weeks on my head and neck because this was the possible path the melanoma traveled in my body.

Most of what cancer patients go through is mental. Yes, we endure so much physically, but once the hard stuff is over we are left with merely a shell of what once was.  It also teaches us a powerful lesson in self-awareness and how to truly listen to our bodies. Discovering the new “normal” during treatment and feeling your body change in ways that you never thought possible is an eye-opening journey. It tunes you into who you are at your core.

Following the surgery on my face, I felt overwhelmed by the change. This wasn’t an optional cosmetic or aesthetic surgery, like a nose job or breast augmentation, this was done to save my life. It was also 100 times more obvious. How do I handle this? I kept asking myself over and over. So I chose to show my face to the world and show them how scary skin cancer can be and started my Melanoma Photo Diary on Facebook. If I can reach just one person and inspire them to go see the dermatologist and get that biopsy done, then that’s what I need to do. So I did. I took pictures and wrote daily. I still do. Mostly, I keep the diary so I can enjoy spending time with friends and family and not have to give them a medical update every time I see someone new.

Why am I telling you my story? So you can learn from me and to raise awareness about the black beast we call melanoma. Listen to your body and pay attention to the changes it makes.

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Skin Diaries This is Brave

This is Brave: Judy Cloud

Most of my life, I would not have associated the word ‘passionate’ with skin cancer, but here I am, passionate about skin cancer. Sounds odd, I agree. How did that happen, you ask?  The answer is this:  I have had skin cancer for over twenty years, and it won’t go away. I have had numerous surgeries to remove cancerous areas. Each day I am looking in the mirror, checking for new areas. And each time I find a suspicious place on my skin, it causes anxiety.

The truth is, skin cancer can largely be avoided by practicing good sun habits – protect your skin from over-exposure to the sun, use sunscreen, wear hats and sun protective clothing, avoid being in the sun during its strongest hours, and above all, do not use tanning beds. Yes, there can be a genetic factor to skin cancer, but largely, it can be prevented. And this is why I am passionate about raising skin cancer awareness. When I was growing up, there wasn’t much, if any, information about the dangers of overexposure to the sun. Kids played outside all day long. Sunscreen, if we had it, was SPF 2 or 4. Sunburns were common for fair-skinned people like me. Then along came tanning beds, which were introduced to us as being much safer than the sun (and which we now know is not at all true). Now we have more access to information. Now we see the results of generations of people who had over-exposure to the sun and went to tanning beds. Now we know better, and now we can do better. I don’t want others to have to go through what I’m going through, and helping to raise awareness about skin cancer is high on my priority list.

I must admit, being an advocate for skin cancer awareness at times puts me out of my comfort zone. I’m not used to having my life, complete with photos of my surgical wounds and healing process, ‘out there’ for all to see. But I need to be brave and continue to tell my story. And you as well, dear hearts. Be brave. If you are battling skin cancer, keep fighting. Keep telling your story. Keep raising awareness. And if you are someone who isn’t practicing the best sun habits, be brave. It’s okay to not have the ‘perfect’ summer tan. It’s okay to not go along with the crowd in thinking that you have to have a tan to fit in. One story at a time, one person at a time, we can raise awareness, passionately and bravely.

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Skin Diaries This is Brave

This is Brave: Heather Van Nest

Hearing the words “You have melanoma, the deadliest form of skin cancer” shakes your entire world, no matter your age. Everything seems to stop as you absorb what it means, what’s at stake and how your life will change.

I am embarrassed to admit a skin cancer exam was not top of mind when I was diagnosed with melanoma at 29–years-old. I was working as an investigative TV reporter and interviewing a dermatologist about an unrelated topic for a local CBS TV station in Florida. He pulled me aside to stress that with my fair skin, multiple moles and family history, (my grandfather had been diagnosed with melanoma) I should schedule my first skin cancer exam. I honestly felt I was “too busy” to take the time to schedule an annual skin cancer exam. I reluctantly followed up and quickly learned that a biopsy of an unusual spot on my stomach was in fact, stage one melanoma.

This wake-up call dramatically changed my entire life as I learned the likelihood of recurrence is high. I didn’t want to waste my life worrying and waiting. I was motivated to stay healthy! I put my investigative reporting skills to work to find the best ways to boost my immune system and protect my skin—those are two things I can control.

Melanoma motivated me to overhaul my entire diet and focus on eating fresh unprocessed foods that strengthen my immune system. Garlic, turmeric, fish oil and every green vegetable imaginable are all a part of my new lifestyle.

My melanoma diagnosis also motivated me to find the safest and easiest way to protect myself from the harsh Florida sun. That’s how I discovered Coolibar’s UPF 50+ thin, comfortable sun protective clothing—my top choice for protection.

Today, 16 years after my melanoma diagnosis, I feel better than ever! I have a 4-year-old son and 7-year-old daughter, who my husband and I are proud to say know about the importance of sun protection.

Melanoma has motivated me to focus on what’s important in life. I have simplified what I can control, cutback on a demanding career and learned to appreciate everyday moments with my family.

I hope you will be motivated to make your annual skin cancer exam appointment. It just might save your life the way it saved mine.

Heather Van Nest is a former evening news anchor for the CBS affiliate in Tampa, Florida, natural health advocate and proud producer of the award-winning documentary, “Risky Rays: Don’t Get Burned.” The skin cancer awareness and prevention program aired on the local CBS TV station and was donated to the local school system.

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Skin Diaries This is Brave

This is Brave: Brian McKenna

Chal·lenge

“A call to fight, as in a battle, a duel, etc.“

It was the spring of 2014. I remember my doctor escorted me past the examining room, straight back to his office, where he closed the door behind me. I may not be a card-carrying member of Mensa International, but I knew something was up. He opened his laptop and started explaining the results from the biopsy he’d taken from my body three weeks prior. Unfortunately, I read three paragraphs ahead of my doctor, and scanned two words that took my breath away, “malignant melanoma”.

I didn’t hear anything he said after reading that.

Fast forward to February 2017. I was diagnosed with a very rare, infiltrating, aggressive basal cell cancer, whose “fingers” wrapped around the nerves in my face and were headed towards my brain. To make matters worse, it metastasized over my entire body. In addition to the aggressive basal cell cancer, melanoma was found on my back. Cancer had challenged me to a fight.

I accepted the challenge.  I wasn’t going to fight cancer, cancer was going to fight me! Instead of “why me,” I embraced “try me” and braced myself for the fight of a lifetime.

In life, you can be the bug or the windshield. I challenged myself to be the windshield. I also challenged myself to share my cancer journey openly, utilizing my public image as a former radio/tv personality, to help bring awareness to skin cancer prevention. I challenged myself to be a loud voice in St. Louis, Missouri, to raise money for skin cancer research with the hope that one day we find a cure.

After nine surgeries in the last 13 months (including a 9+ hour facial reconstruction), over 400 stitches, radiation, chemo, physical therapy and occupational therapy, I’m here to tell you that I am on the road to recovery.

I challenge all of you to be kind, stay humble, do more than is expected, give more than you take, dream big, make a difference in this world and GET REGULAR SKIN CHECK-UPS! Your Vibe Attracts Your Tribe!

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Skin Diaries 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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Educate Others Expert Rx SunAWARE

Ocular Melanoma: Skin Cancer in Your Eyes?

Yes, melanoma – known as the most serious type of skin cancer – can occur in your eyes! In fact, according to the Melanoma Research Foundation, ocular melanoma (also known as OM) is the second most common form of melanoma, with about 2,000 new cases diagnosed each year in the U.S. About half of OM cases are eventually fatal as the cancer spreads to other parts of the body.

And as with all melanoma or non-melanoma skin cancers, prevention starts with education. A terrific guideline: The greater your risk of developing skin cancer through exposure to UVA and UVB rays, the greater your risk of developing OM.

Why the Eye?

OM is similar to skin melanoma, but there are significant differences. Many people have heard of the natural pigment melanin, which gives our skin its particular color, and we might also know that melanoma develops from the cells which produce melanin. But these cells are not just in our skin. We carry them in our intestinal lining, and in our hair; they also give color to our eyes.

Who is at Risk?

Researchers at the Memorial Sloane-Kettering Cancer Center say that people most at risk for OM  generally:

  • Have fair skin, and tend to sunburn easily.
  • Have light-colored eyes.
  • Are of European descent, especially northern Europe.
  • Have occupations such as welding, where proper eye protection is vital.

Also, age is a factor: people 50 and above have a much greater risk of developing OM.

What Can You Do?

It’s important to realize that anyone can develop ocular melanoma. Our eyes are constantly exposed to the sun whenever we are outside, whether we are active on the tennis court or running errands in the car. We should pay attention to eye care right along with skin protection. Here are some tips:

– Invest in a good pair of sunglasses. Look for a pair that blocks 99-100 percent UVB and UVA rays. The Mayo Clinic in Rochester, MN offers tips on selecting sunglasses.

– Wear a hat with at least a 3-inch brim (minimum recommendation of the American Academy of Dermatology).

– Start your children early on the path of UV protection. Get them into the habit of wearing sunglasses and hats.

Take it from melanoma survivor Timna: “EVERYONE needs to do everything they CAN do to protect their eyes”.

Check out our selection of sun protective sun hats and sunglasses.  All Coolibar sun hats are UPF 50+, and all sunglasses carried by Coolibar block 100% UVA/UVB rays.

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