The need for sun protection is universal. Whether you live in a hot or cold climate or have fair or dark skin, we all need to be mindful of our exposure to UV rays. Coolibar recommends gifting UPF 50+ protection to the people you love most as a way to help them live a sun-safe lifestyle while enjoying the outdoor adventures they love most.
For tiny cuties who already love the water:
“Because babies have thinner skin, sunscreen is not recommended for infants under 6 months of age.”
As part of our “Together We Will” series, Coolibar had the opportunity to talk to Steven Silverstein about his journey from a shocking stage-4 diagnosis to today. Here is Steven Silverstein’s remarkable story in his own words.
“I always went to a derm. My sister is a derm. Even with that, I still had stage 4 melanoma that was misdiagnosed by my dermatologist and a plastic surgeon,” said Steven Silverstein as the conversation started. “I had something on my face that had been removed and it didn’t go to a lab, labs weren’t standard back then,” he said. “Sometime later, I had swelling on my neck and got a needle biopsy.” By then the cancer was in his liver and the doctors told him not to bother having surgery. “Why go thru that?” they said. They wrote him off. But they didn’t really know Steven Silverstein.
“Here’s the thing, my daughters were 13 and 16 when I was diagnosed. I wasn’t going to give up without a fight. I wanted to get as much of the tumor burden out, tumor out, so I decided to have the neck dissection.” Steven told us that there were no clinical trials at that time, so after his surgery, he did a “chemo cocktail”, which did not work, then direct chemoembolization to his liver.
“What I wanted was a systemic approach, a protocol,” said Steven, sounding frustrated and impatient. After his chemo, he started researching options. Interleukin-2 (IL2) was available but its reputation was brutal. “I was told it had a 6% survival rate for someone in my situation,” Steven pauses, the memory hangs in the air. The regimen was brutal. “I would go to the hospital for a week, get IL2 every 8 hours for seven days, then go recover for three weeks before starting another cycle. My hospital time was spent in the intensive care unit for 4 cycles, over 4 months, and I had lots of challenging side effects.”
With limited options left, Steven was forced to sell his family business to protect his family and other interests. After all that, Steven asked his doctors if there was anything proactive he could do. He did GM-CSF, a drug used to fast-track the recovery of white blood cells following chemotherapy, for two years. But, once again, there was no protocol. The use of clinical protocols allows doctors to offer appropriate treatments and care. In typical Steven fashion, he turned a dead-end into a turning point. “I was curious about how drugs get to the doctor’s practice. Why were there medications that sounded so promising, yet weren’t tested and approved for melanoma?” He had found his mission.
Today, Steven Silverstein is a 15-year survivor of stage 4 melanoma. He’s also the Melanoma Research Foundation’s Chairman of the Board and his story underscores the MRF ’s mission to “transform melanoma from one of the deadliest cancers to one of the most treatable through research, education and advocacy.”
Steven is determined to see that the MRF funds grants with leading scientists. After all, “research” is their middle name. He has gotten to know many the doctors and scientists working to treat and cure melanoma. He is dedicated to making connections for people, to get them the kind of care he had to unrelentingly fight for himself.
Steven tells us he got involved with MRF because they’re patient-centric and grassroots. “It resonated. I like the buddy program, meeting people and working with them 1-1. The local events keep it real and it’s very gratifying to help other people.” In fact, MRF has a community fund-raising toolkit for smaller markets to do events, inspired by a personal story. “I spoke with a woman in a remote area who had lost her son. She apologized for only being able to raise a small amount. She does a pizza party once a year, educating 20 or so people about melanoma prevention. Well, I couldn’t accept her apology. Because, within a few years, she had educated her entire community about sun safety and melanoma! So, the money was really secondary!” He continues, “THIS is MRF. It’s not just about the fund-raising, it’s about education, dollars raised AND people touched.”
In addition to the MRF’s science grants, education materials and symposiums, the organization promotes advocacy. In 2009, MRF started a program through the Department of Defense, including 4-5 cancer groups sharing 4-million dollars. Today, through their continued advocacy efforts and the help of the great team at the Melanoma Research Alliance, that number has grown to $80 million to be shared between 17 cancer groups. Steven proudly notes, “Out of $250M of research funding to 2017, melanoma got $50M. MRF also funds $1-1.5M per year themselves.”
Steven Silverstein, MRF Chairman of the Board, is a volunteer. He tells us that 60% of their board members are stage-4 survivors. They are patients from various trials over time. They are all volunteers. They are all warriors.
Steven started this journey when his daughters were teenagers. He has now lived to attend both of his girl’s weddings and hold his first grandchild.
We often think of melanoma as a cancer of the skin, but ocular melanoma, a lesser known form of melanoma, can develop in the eye. There are only a small number of physicians in the US who specialize in ophthalmic oncology. One of those specialists is Dr. David Abramson, Chief of Ophthalmic Oncology Service, at Memorial Sloan Kettering Cancer Center (MSK) and Professor of Ophthalmology at Weill-Cornell Medical Center. Dr. Abramson will be honored with the CURE OM Vision of Hope Award at the Melanoma Research Foundation’s 17th Annual Wings of Hope forMelanoma gala in New York City this October.
Founded in 2011, CURE OM(the Community United for Research and Education of Ocular Melanoma) is the MRF’s initiative to increase awareness, education, treatment and research funding for ocular melanoma, while improving the lives of people affected by this disease.
As Chief of Ophthalmic Oncology Service, Dr. Abramson utilizes the Center’s close associations with specialists in pediatrics, radiation oncology, and medicine, to offer coordinated, state-of-the-art care with access to novel therapies and clinical trials not available anywhere else in the country. We had the honor of speaking with Dr. Abramson about his specialized path:
COOLIBAR:How did you find your way into the specialization of ophthalmic oncology?
ABRAMSON: I was fortunate to train in Ophthalmology at Columbia Presbyterian in New York which-at the time-had the world leaders in ophthalmic oncology (Algernon Reese MD and Robert Ellsworth, MD). I love the field of Ophthalmology but wanted to do something that made use of my scientific background, surgical training (I have performed more than 7,500 surgeries), research skills (I have published more than 700 papers), desire to help women and men, adults and children. I did a fellowship in ophthalmic oncology and did additional specialized training in pathology at the Armed Forces Institute of Pathology and Radiation Oncology. I am the only physician at MSK tenured in Surgery, Pediatrics and Radiation Oncology.
C:Have you seen a significant increase in the number of melanoma in the eye diagnosis year after year?
A: No but these cases are handled by only a small number of physicians in the US so we are quite busy seeing patients at MSK.
C:How does the MRF help you do the work you do?
A: Research doesn’t just happen any more than a car drives without gas. Money and awareness are the fuel for research and without that our car doesn’t go. MRF does both.
C:What inspires you to continue to pursue your work each day.
A: I am inspired by my failures, not my success. I try to understand why we failed, what we can do to be more successful and commit myself to those patients who have lost their battle with cancer. I will stop when I cure 100% of patients with no side effects.
C:Is there anything else you would like to share about the work you do?
A: I am the quarterback of a team and while it helps for me to call good plays our success is a result of that team. My nurses, researchers, colleagues, technicians and even the people who maintain our instruments are critical to success. Without the commitment of a special place like MSK and the support of organizations like the MRF, I would be throwing passes to an empty field.
Ocular Melanoma is the most common eye cancer in adults and the second most common location for melanoma. Approximately 2,000 Americans are diagnosed with ocular melanoma each year, and about half of these cases spread to other parts of the body, most commonly to the liver. When this occurs, it is most often fatal. There are treatments to help alleviate symptoms and extend life, but there is no known cure for ocular melanoma.
Ocular melanomas develop between ages 55 and 65 most often and usually are detected on an ophthalmic examination without symptoms. They are a disease of people whose families emigrated from Europe and rare in Asia and Africa. The more north in Europe your family is from the higher the incidence of ocular melanoma. Unlike cutaneous melanomas, sunlight plays no role in their development. Ocular melanoma should be treated by an ophthalmologist who specializes in treating eye cancers as most Ophthalmologists have limited experience in managing these tumors. Dr. Abramson combined his love of Ophthalmology with his scientific background, surgical training, research skills and desire to help people of all ages to become one of the few specialists qualified to treat ocular melanoma. He has trained with pioneers and world leaders in ophthalmic oncology, including Algernon Reese, MD and Robert Ellsworth, MD.
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.
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.
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.
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.
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.
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.
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.