Archives

Together We Will

Together We Will… Cure Ocular Melanoma

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 for Melanoma 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.

The CURE OM Vision of Hope Award will be formally presented to Dr. Abramson at the Wings of Hope Gala in New York this October. If you would like to attend the Wings of Hope Gala or learn more ways to support the Melanoma Research Foundation, visit: www.melanoma.org/get-involved/signature-events/wings-of-hope-galas.

No Comments
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.

No Comments
Together We Will

Together We Will: Kendra Reichenau

Kendra Reichenau, Coolibar CEO

Kendra Reichenau, Coolibar CEO

At Coolibar, we take our mission to heart. We know our customers depend on the quality of our UPF 50+ hats and apparel, and we work tirelessly to ensure we are doing our best to offer the finest sun protective products on the market. True to our mission, we champion skin cancer awareness and prevention, and we encourage everyone to enjoy the outdoors with sun safe practices. Rigorous 3rd party UV testing of our fabric samples, adhering to high-quality standards, and working with medical professionals to better understand preventative measures related to UV exposure, are just a few of the ways we strive to be the leaders in the industry.

Last May, we partnered with the Melanoma Research Foundation on a campaign entitled, This is Brave, to further our mission reach. Determined to change melanoma and skin cancer statistics, This is Brave shared real-life stories of skin cancer and melanoma warriors. During the campaign, Coolibar unveiled a limited-edition “Be Brave” shirt inspired by the pediatric melanoma community and we donated 100% of the net profits to support the MRF’s pediatric melanoma programs.

I am very proud to announce Coolibar has been honored by the Melanoma Research Foundation as the recipient of the 2018 Corporate Leadership Award. We humbly share this award with each, and every one of you, for helping us champion our mission every day. Without your stories, passion, and dedication, our mission might be impossible to accomplish. With your help, we know Together We Will change the skin cancer statistics.

The award will be formally presented to Coolibar at the Wings of Hope Gala in New York. If you would like to attend the Wings of Hope Gala or learn more ways to support the Melanoma Research Foundation, visit here.

I thank you for sharing the MRF Corporate Leadership Award with all of us at Coolibar!

No Comments
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.

 

No Comments
Skin Diaries

A Game She’s Not Ready to Lose

My name is Lisa Pace. I’m a college basketball coach and a licensed massage therapist. I found out I had skin cancer at 23 years old. I had just gotten my first division 1 college coaching job.

I was talking to my mom one night about my job and all the responsibilities, and in conversation she told me now was a good time to see the doctors so they have a baseline of my health moving forward.

So, I made an appointment to a dermatologist. They did a skin check and found a couple places, small light brown spots, that they wanted to biopsy. They did the biopsies and told me they would call and let me know the results. I figured since I had fair skin, red hair, and freckles, this was probably common. I didn’t know. I think at my young age I was trying to rationalize and justify why I had skin cancer. Later on, I found out anyone can get skin cancer.

It was time for recruiting. I couldn’t wait! July was finally here and I got the opportunity to travel from state to state, gym to gym watching young women play basketball. I was headed to Las Vegas. This was a huge tournament. I sat beside the legendary Pat Summitt and watched some games, and went from gym to gym all day. I couldn’t believe this was my job.

Later that night when I returned to the hotel room, I checked my messages. The dermatologist had called and said they had the results. When I spoke to them they said my biopsies came back suspicious, that they were skin cancer, possibly melanoma, and that I needed to come in and let them take more out.

I remember thinking, the last time I was at the dermatologist, it was a little bit of numbing medicine, a small cut, and a band-aid. There is no way I am leaving Las Vegas to go back and let them do that again. I am recruiting. I am watching future division 1 players. It can wait. So I waited. I finished up recruiting in July and made an appointment when I got back home.

This time it was different. I went to a specialist for a second opinion. They went back in the same spots, but took a huge amount out of my leg. It was my right upper thigh and my lower calf. I had stitches, bandages, bleeding, bruising, swelling, and I had crutches. Well, that was definitely different. I knew I would have these crutches for a day or so but as a former athlete, those things had to go. I didn’t have time to be “injured.” But the good thing was, they said they got it all. This meant no more skin cancer, so I thought.

It took a while, but I healed up fine. I continued to coach, and I continued to tan. Tanning beds were popular. I had tanned a lot in college. There were all kinds of promotions with free lotions, buy 5 visits get 5 free, one month unlimited, etc. I enjoyed going. As I got older, I didn’t go as much. However, the damage had been done and those times I was still tanning was just adding to my future surgeries. I had no idea that the tanning bed was causing so much damage to my skin. I never saw any tv commercials warning about tanning bed use and skin cancer, there was no social media platforms warning me of the danger and consequences.  I don’t remember much being said about it at all in the beginning.

One morning I found this white spot on my left cheek. I watched it for a couple weeks and noticed it was getting bigger. So I went back to the dermatologist. This changed my life. They took a huge chunk out of my face. I was devastated. I couldn’t look at myself. I spoke with my doctors and after much discussion, I found out that all those times going to the tanning bed had caused me to have skin cancer. This was the first time anyone had discussed this with me. Remember, this was almost 20 years ago. I had done this to myself. I questioned every time I had ever wanted to go tan. Why did I do this? I didn’t lack self-confidence, I just wanted to have a bronze look and to “fit in.” I knew better than to “follow the crowd.” I was supposed to be a leader, to set examples for others. Now look at me. I was so angry at myself. And this was just the beginning, more and more surgeries would come.

Fortunately for me, I was coaching college athletes and we know we have a choice every day. When we wake up we choose to have a positive or negative mindset. We choose to win the day or wallow in self-pity. We outwork our competition. And skin cancer was my competition.

Fast forward almost 20 years, I have had 86 skin cancer surgeries. My skin cancers have been basal cell, squamous cell, and melanoma. I won’t tell you that I was positive every minute of every day. The mental aspect after surgery can be draining. I did have moments when I didn’t want to get out of bed, when I would look at all my scars and get discouraged.  I dreaded looking in the mirror because I thought I would find a new skin cancer.  But those moments didn’t last long.

I know I’m going to win this battle. I know I do all the right things as far as protecting my skin and getting skin checks so I am confident in knowing skin cancer has met its match. It’s going to be a battle with me.   And I want people to be proud of their own skin. I own my scars now. They have given me wisdom, they motivate me, and they remind me that even though I was knocked down 86 times, I got back up 87 times.

I can only hope my story will inspire someone else to make the necessary changes in their life to protect their skin, to get regular skin checks and to win the day.

4 Comments
Skin Diaries

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!

No Comments
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.

No Comments
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.

No Comments
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.

No Comments
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.

2 Comments