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Together We Will

Together We Will

Together We Will… Educate to Self-Advocate

Sara Gorman was healthy. She visited her doctor once a year for an annual check-up. She had a career she loved in television and had just married the love of her life. Then, six weeks later she was diagnosed with systemic lupus at the age of 26. Overnight her very new husband changed from being her partner to her caretaker. For the first few years, Sara dealt with her illness by fighting it. She held onto her career and did everything she could to maintain life as she knew it. As a result, she developed further heart and lung complications, kidney problems, and lost her hair a number of times.

“Lupus infiltrated my life so unexpectedly that I had no idea what to do. When you’re healthy, the concept of a chronic illness is completely foreign. It took me two to three years to wrap my head around the fact that this wasn’t going to go away with a Z-Pack. I was going to have to embrace it and start accommodating for it.”

With her diagnosis, she was given a number of reading materials and advice to prepare her for what to expect. Mainly depression, fear, anxiety, exhaustion…the list goes on. But Sara was still young. She wanted to get out, be active, but with Lupus, she even needed to embrace a new relationship with the sun. What she really needed was information on how to live with lupus and more importantly, live well. This realization was a turning point and the beginning of her career as an author, blogger and designer.

In order to truly live with lupus, Sara needed a blueprint; a positive approach to managing the disease. She chartered a new plan for herself and turned it into the book “Despite Lupus: How to Live Well with a Chronic Illness”. She addressed the mistakes she made in denying her disease in her first few years and explained how people and their support teams can respond to their diagnosis in a positive and healthy way. When life hands you lemons, you make lemonade and share it with everyone!

“When I first went on tour to share the book readers would say things like, ‘gosh, I could have written pages 12 to 15 myself!’ Others have handed the book to family and friends to help them understand their life with lupus. When you have a chronic illness, it can be hard to find your voice and share what you’re experiencing with others. Helping people overcome that and be positive about it means so much to me.”

The key to living well is not only Sara’s positive “can do” approach, but also understanding her needs and sharing them with her support team. You need to be your own patient advocate. She learned to say “no” in order to care for herself. When she says no, it’s not about putting her life on hold to care for herself. It’s all about caring for herself so life can continue. This can be a tough idea to embrace, especially for working mothers. Luckily, her husband has been there since her diagnosis. Her daughters, now eight and 10 years old, have grown up with a mother with lupus.

“I am who I am and I’m better when I’m healthy and happy. My kids understand that having a healthy mom means letting me rest. If I need to take a nap instead of going to a softball game out in the sun, they fully embrace it and support me. They even go so far as to make sure I’m protecting myself, like wearing skin protective clothing and a sun hat outside. Watching them grow up with empathy and compassion for their mother and others is wonderful. My illness might slow me down, but I will not judge myself for going at my own pace in my professional or personal life. It’s what I need to do to live well.”

To learn more about Sara’s journey with lupus, her workshops, book or one-of-a-kind pill cases, you can visit her blog Despite Lupus or website Pillfold. Five percent of all purchases are donated to various organizations that are promoting awareness, or doing something to improve the lives of lupus patients.

Sara will also be the keynote speaker on October 27th for the 18th Annual North Carolina Lupus Summit.

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Together We Will

Together We Will… Navigate Skin Cancer Prevention, Detection and Treatment

Some people are born for the careers they choose. Others wake up one day thinking they need a change, then suddenly discover they’re meant to help save lives. That’s what happened to Dan Latore, Executive Director of The Skin Cancer Foundation. He’d never dreamed he’d work for a cancer foundation, but now his job is to dream up ways to elevate the Foundation’s purpose and mission.

COOLIBAR: How did you become the Executive Director of The Skin Cancer Foundation?

LATORE: I don’t think anyone grows up thinking they want to be the executive director of a cancer foundation. But twelve years after I joined the team here, I still love it.

C: You started your career as an ad and sales guy, what is it about The Skin Cancer Foundation that has kept you going for over a decade?

L: The results. They’re not about ROI on ad dollars spent or sales numbers, they’re about people. One of my favorite stories is about a woman who donated $20 on behalf of her husband Gus who had passed from melanoma. It was all she could spare, but it was important to her to give to an organization that could potentially help the next “Gus”. We hear stories like this every day. When you have the ability to touch people’s lives through the work you do, there is nothing more inspiring.

C: How do you do it? How do you and your colleagues continue to support this community in such an impactful way?

L: The work we do is so essential when it comes to helping people through every stage of diagnosis and from every vantage point, whether they’re a patient, doctor or caregiver. We literally save lives with early detection programs like Destination: Healthy Skin, our RV that travels across the country to screen and educate people about melanoma. SkinCancer.org is often THE source for information. Nearly 9 million people each year look to our website to get the answers they need. Our Seal of Recommendation and information—all verified by physicians and dermatologists—help break through the fear. Knowledge is power. We are all about empowering people to get the right diagnosis, the right treatment and the right help.

C: Donors and potential donors want to know…where does the money go and how do you decide how much is donated?

L: We’re 100% a people-driven non-profit. Every dollar we get whether it’s $20 from a personal donor or a $25,000 grant is meant to save lives either through education, advocacy or research. It’s our job to ensure that every donation is used in a way that is smart, efficient, impactful and durable. We’ve worked with the government and National Council for Skin Cancer Prevention to tackle issues like tanning bed regulations and FDA limits on sunscreen ingredients. We source and support “Young Investigators”, or doctors who are poised to make scientific breakthroughs. Most importantly, we educate people.

C: What progress have you seen on behalf of your mission?

L: Currently, the incidence of melanoma and skin cancer are on the rise, but mortality rates are falling. This is progress. We want more people to get checked and diagnosed early so that they can be treated, and lives can be saved. We’ve turned early detection into a trend alongside rash guards for children, higher SPF in retail stores, and sun protection clothing for sportsmen. We’re also seeing the impact of our “Go With Your Own Glow” campaign with celebrities embracing their natural skin tone and devaluing the beauty standard of tanning.

C: Can you share a personal story about the important work SCF does?

L: There have been SO many stories! One that stands out is Linda Nagel. Linda lost her husband Todd Nagel, to melanoma ten years ago when he was in his mid-thirties. Since then she has hosted The Todd Nagel Open, a golf tournament that raises about $25,000 annually for skin cancer research. With her help, we grant the amount to a “Young Investigator” poised to make a difference. I look forward to the day when one of Linda’s doctors makes a breakthrough in honor of her late husband.

C: What is the most important thing you want our readers to know about the Skin Cancer Foundation?

L: We’re here to help. One of our most vital assets is SkinCancer.org. Google “skin cancer” and you will get a large number of resources available. When someone is diagnosed, they are overwhelmed and confused. Through our network of doctors, we can provide credible information and resources that support patients and caregivers in a way that is understandable. We work hard to help everyone find what they need quickly and effectively.  It’s all a part of our mission to save lives through education, prevention, early detection, and prompt treatment of the world’s most common cancer.

 

Latore and his team will be at The Skin Cancer Foundation’s Champions for Change Gala this Thursday, October 25th at the Plaza in New York City. To learn more about the event or to make a donation please visit: https://www.skincancer.org/events/gala.

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Together We Will

Together We Will… Fight for Our Family and Others

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.

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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.

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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: 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!

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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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