This is Brave is in its fourth year! In four years, we’ve raised over $100,000 for the Melanoma Research Foundation, and we’ve reached millions of people with messages about protection and prevention through social media. The secret of this campaign’s success is our warriors.
When Coolibar first started designing UPF 50+ clothing, we were inspired by family and friends who were battling skin cancer. We wanted to do more to help them stay sun-safe and get back outside. Since then, we’ve connected with hundreds of warriors living with all kinds of sun-related issues: melanoma, lupus, albinism, XP and more. We’ve met firefighters, kids with pediatric melanoma, Olympians, professional golfers, and women of all ages sharing their skin cancer stories in an effort to keep their loved ones sun safe.
These warriors are…STRONG, BRAVE, AWARE, JOY, HOPE, THANKFUL, RESILIENT, GRATEFUL
…and we are truly HUMBLE.
Helping warriors share their story is an honor. It can take a lot of courage to put your experience ‘out there’, and we’re humbled by every story we get to help share.
We’re remembering two extremely courageous warriors that we lost in 2020–Susanne Milne and Eric Martin. Both fought incredible battles with Stage IV Melanoma, and they did it with hope, resilience and strength that most people will never get to see. Throughout their numerous treatments and surgeries, each did more than their part to support the melanoma community and we will be forever grateful.
As remarkable as this may sound, this is the first time we’ve lost warriors who have shared their stories with us. It’s helped us acknowledge just how incredible each of these stories are. Even though we’ve said goodbye to Susanne and Eric, we can still help them advocate and save lives. With their stories, we can continue the work of our friends indefinitely. It’s an incredible feeling.
Whether you’ve lost someone to skin cancer, or for any other reason, we’d like to celebrate each of them with you. We invite you to share what makes you smile at the memory of them in the comment section below, or through our Facebook or Instagram pages. The best way to honor the people that are gone is to keep telling their stories. We’re here for each other and we’re in this together. Let’s BE BRAVE. <3
Well, it’s been two years since my last Coolibar blog. So much has happened since then that I really don’t know where to begin. To refresh, my cancer journey started in May 2014. An ex-girlfriend found a suspicious spot under my right armpit and told me that I needed to get it checked. As many men typically do, I told her that I would take care of it in the fall. She said that was not an option and made an appointment for the next week. As it turns out, it was malignant melanoma. I will always be grateful to her for possibly saving my life. Since then I have been very vigilant about getting regular check-ups.
Well, cancer came back in February 2017. I had five cancer surgeries in four weeks on my face. The fifth surgery—which was supposed to take four hours—was extremely rare and difficult and ended up taking nine hours! It required 300+ stitches, took a chunk out my right ear, left me with partial face palsy and a right eyelid that couldn’t blink. The doctors had to take a few tendons out of my right leg and rewire the nerves in my face. After radiation and physical/occupational therapy, the hope was that one day the nerves would re-trigger, the face palsy would go away, and I would be able to blink again. Thanks to the miracle workers—doctors, nurses, therapists and staff—at Barnes/Wash University/Siteman I’m doing about as well as can be under the circumstances.
After that surgery, I went through seven rounds of chemo pills and one week of putting chemo ‘hell ointment’ all over my body in 2019 and 2020. Though it has been rough, I have persevered because of consistent check-ups and my three most prized possessions in life:
My faith. My families. My friends.
What else do I need? I’m so blessed to have the best family ever. They are my true currency. I have the greatest friends and a community that cares so much that they threw several fundraisers and a parade with 500 cars to help me pay my medical bills and other bills while I couldn’t work. I could never express enough appreciation and gratitude for the love, support, prayers and strength this community has shown me. They inspired me to get out of bed on mornings when I had nothing physically or emotionally in the tank. I didn’t want let them down.
I initially shared my story publicly with the hope of inspiring others to keep on keeping on. Throughout my life, I have witnessed family and friends battling like warriors when facing cancer, depression, other illnesses or the loss of loved ones. They inspired me and gave me the perfect blueprint on how to not let adversity bully me. You lose 100% of the time when you don’t battle.
I have had many people ask me how I remained so tough throughout all of this. As an Irishman, I have been in many scraps throughout my life but I don’t think that’s what they were referring to. I would always tell them that mental toughness is a lifestyle. You don’t need to talk or act tough. That’s actually a clear sign of insecurity. Authentic toughness is earned through your confidence, kindness, positivity and humbleness. It’s the ability to stay focused in the moment. Trust me, when getting ready for a cancer surgery or driving to another radiation appointment, or knowing you have another round of chemo ahead of you, mental toughness is so much more important than physical toughness. I’ve always been a believer in the motto “strength of body, power of mind”. Every scar tells a story.
Thank you Coolibar for the awesome UPF 50+ gear that allows me to protect myself outdoors while looking fashionable. I look forward to the next part of my journey and what lies ahead. I thank God every night for two things:
1. Making my reality bigger than all of my dreams.
Hi, it’s Amy Nichole here once again. The last time I shared my story with you was in June 2019. That was right after I had found out that my melanoma had returned not once, but twice! Since 2019, I’ve been seeing my oncologist every 3-6 months in addition to seeing my dermatologist every 3 months. Safe to say, I’ve had my share of appointments and tests since I last shared with you.
Back in October 2019, my oncologist ran all kinds of tests including a full body PET Scan. With the melanoma coming back like it had, we needed to get a better picture of what we were facing. I also have family history of Breast, Melanoma, Cervical and Lung cancers so we tested for genetic cancer markers. I tested positive for two cancer markers which increases my risk for Breast, Ovarian, and Pancreatic Cancers. Following these tests, we knew what we might be up against, so I started getting proactive screenings for other cancers. More tests!
To add to the numerous battle wounds and scars, I already caried on my right arm and back, between Nov-Dec 2019 my dermatologist found more than 10 atypical spots, all of them ranging from questionable to severe and needing to be removed and tested. One of those spots had been considered ‘moderate’ in June 2018 and was left alone. It ended up growing back as Melanoma.
Since 2019, my outlook on life has changed significantly. I’ve become an advocate for skin cancer and do my best to educate others about protecting themselves from the sun. I’ve even started fundraising! In May 2019, I was able to raise $900 for skin cancer research, education and prevention. Between May and June 2020, I raised $1,000 with shirts I had designed to help increase awareness. Coolibar even helped provide the long-sleeved shirts for it!
I’ve also changed my habits. Since my initial diagnosis, I’ve gone from being carefree in tank tops and no hat, to wearing only UPF 50+ clothing. Coolibar has just about taken over my closet. I always wear sunscreen and have a hat and my Coolibar gloves on when I’m outside, no matter the weather. With the diagnosis and scares I have had, I know how important it is to keep yourself protected. I have even changed my diet, per my oncologist’s request, as a preventative measure. I’m pleased to say that all my test results were clear throughout 2020.
The downside of the past year was that my best friend Michelle, lost her battle with Pancreatic Cancer. She was initially diagnosed in May 2019 and passed away in on October 25th, 2020. She was with me in January of 2020 when I got the news that I was cancer-free for the first time since my first diagnosis. She never missed my appointments because she knew how much her support helped me through. She touched me deeply and I am forever changed. I’m so grateful to have been by her side in the last few days of her life. Seeing her go was one of the hardest things I’ve ever done, but I’m glad I was by her side just like she had been for me. Rest in Peace Michelle! I love you forever and always my soul sister!
I’ve learned through all of this that beautiful things can come out of the darkest places. About a year before she passed in November 2019 Michelle received the news she was momentarily cancer free. We celebrated by doing a warrior portrait session. After she passed, her family looked to those photos for comfort as they celebrated her strength and resilience. They will forever be cherished by her family. She was a true warrior and will live on in the hearts of many people. Michelle inspired me to donate a warrior portrait session every year in her memory. It’s something I can keep giving to others to help them through when they need it. For that, I’m grateful.
Considering everything that I’ve been through, and continue to go through, I get asked for advice often. It tell people that it’s all about having a good plan with your team of doctors. Having everyone on the same page is so important. Being aware of your body is also extremely important. Ultimately, you are more likely to catch a sudden change, not your care givers. So, if you see something, say something! NEVER miss your skin checks and don’t be afraid to go in and ask your doctor to double-check something if it isn’t looking right. It is better to be safe than sorry as Melanoma or any form of cancer can come on suddenly and change quickly.
Most importantly, scars aren’t scary or anything we should hide. They’re a part of us. They help tell the story of how we’ve survived our battles. They’re what remind us of the pain we went through. Every new scar makes us stronger than the scar before it. They’re tough and courageous. They’re our war stories and our badges of strength. Be proud of your scars as some may not even be visible to the naked eye but are deep down inside of you. Don’t be ashamed and don’t be shy. Show your courage and strength along with your scars. Inspire someone. You may change someone’s life in more ways than one with your story as each battle is something so personal to learn from.
Melanoma, what an ugly word. The first time I heard it, I was six. I could barely say it. I wish the story ended there, but it was only the beginning. Graham, my brother, was diagnosed in 2013 with stage III melanoma on his left arm. When I was growing up I knew Graham was different because he had melanoma, but I never knew that he could die.
Usually when bad things happen in families, emotions take over. The emotion we all wanted to have was bravery but that is hard to do when you’re scared. But we were scared together, and that gave us strength.
I watched Graham go through lots of surgeries, and painful tests, and it was hard to think about what might happen if his melanoma came back. We had to be brave together. As I got older, I learned more about melanoma, and that this type of skin cancer can be deadly. Graham’s cancer did not come from a bad sunburn or being out in the sun too much, his was genetic, but most are not like Graham’s.
Once, in 5th grade, I had to write a story about my hero, I picked Graham. I did a quick google search about pediatric melanoma, and Graham’s story was the first thing that came up. I remember sitting in the library crying. It was at that very moment that I realized exactly what this all meant. I took a big breath and thought to myself, I have to be brave for Graham. I can’t do much to change his situation or find a cure, but I can be brave.
Advocacy is one way I can do something to try to help. I try to tell people to wear sunscreen and stop tanning. I am in middle school, so it is hard to get people to listen but if someone in their family had melanoma they would understand the risk. I tell people about skin checks and changing moles. We raise money for research, we go to Washington DC to ask Congress for research funding, we teach sun safety and we share stories. The more I can share, the more I hope I will prevent someone from going through what he has. Graham is not only my brother, he is my friend. I cannot imagine life without him. I wish science would find a cure. Until that happens, I will continue to brave, because sometimes that is all you can do.
For those of you who don’t know my story, my name is Karolina Jasko. I was diagnosed with acral melanoma in 2016 a few days before my eighteenth birthday. I was a senior in high school dealing with a melanoma diagnosis in the midst of getting ready for college and trying to get excited for senior prom and graduation. It was a scary thing!
My mom had melanoma twice, so I was familiar with the disease, but never in a million years did I think it could happen to me. Especially at such a young age. Luckily, I had a team of phenomenal doctors and a wonderful support system that helped me get through.
Five years later, melanoma is still one of the deadliest cancers in the world. Five years later, being diagnosed with melanoma still impacts me every day. Five years later, I am stronger…
When I was first diagnosed with melanoma, my mental health fell apart a little bit. I took on a lot of the heavy, emotional feelings that my family and friends were sharing. I didn’t want them to see that I was upset and scared too. I wanted to be strong for my family and show them that everything would be okay. Everything did end up being okay; but holding in that fear during that time was hard.
An experience like this changes you. It changes your family. It changes your support system. You view things differently, you take precautions that maybe you normally wouldn’t have, and you react differently to certain things people say. You also learn to appreciate things more. When I say I’m stronger, I wholeheartedly mean that. Through my diagnosis and treatment, I learned to be stronger for my family, and stronger for me.
For all of this, I am so THANKFUL.
As Miss Illinois USA, I was able to use my title to talk through my experience. I could share the fear I felt, and the shame and insecurities I carried. But most importantly, I was able to help spread awareness and the importance of prevention.
Although I no longer hold the title, I continue to spread awareness and talk about prevention. I’m currently a full-time graduate student at Northwestern University, but I still find time to support the Melanoma Research Foundation and other organizations whenever I get the chance. Sharing our stories and supporting each other matters! Five years later, I continue to get skin checks and body scans with my wonderful dermatologist. I wear sunscreen and avoid UV Rays. Five years later I am stronger and I’m here to keep sharing my story and making sure others stay sun safe.
This year, in 2021, when Coolibar invited me to write again, I was somewhat stymied. I haven’t done anything! In the past year, I haven’t done any speaking, volunteering, or public fundraising. The activist part of my life was put on pause along with normal life thanks to the pandemic.
Like a lot of others, the past year was extra challenging. In order to feel some level of normalcy and feel like I was making a difference, I started making masks for friends, family and a local business. All the time I would have spent the year before helping fundraise for melanoma research, I spent making masks.
Still, as an activist, I felt somewhat lost and without purpose. I know I wasn’t alone in this. I kept blogging and talking about my own skin cancer journey, with the added variable that COVID-19 brought into the mix. I put off my six-month skin check and seeing my oncologist. It was a very scary time for me and other cancer survivors.
Before the pandemic, my melanoma treatment has been immunotherapy, Yervoy, which really did a number on my immune system. It’s been more than a year since my last infusion and still when I get a cold or virus, I’m sick for double the time a normal person would be sick for. My immune system basically goes bonkers.
Knowing what we knew about COVID in the beginning, I was so fearful of what could happen if I got it. I am a single mother of two girls, Luciana (9) and Arabella (6). I was beside myself with fear. I’ve now gotten my vaccine; the fear has become less but it’s still present. I fear for my friends and family who haven’t gotten their shots yet, and I wonder what it will be like once we truly find our new normal as a society. Raising awareness in 2021 is definitely going to be different than in years past. At this point who knows what’s going to happen. However, what I am hopeful for is people coming together for the greater good and all those things everyone had to put off during 2020 finally come to fruition.
At Coolibar, our mission is everything. It’s the essence of our DNA, which is why we partner with organizations working hard to save lives like the Melanoma Research Foundation (MRF). In addition to raising funding for life-saving research and science, their dedication to patients and caregivers is absolutely incredible. The endless, first-hand testimonials we’ve gotten say it all…
“When I needed answers and had no idea where to start, the MRF was there.”
“We’re so grateful for the support the MRF has given our family.”
“The MRF saved my life.”
This is why we became the Official Apparel Partner of the MRF in 2020. While their team works to fund life-saving research, treatments and education, we can help by protecting everyone under the sun with UPF 50+ clothing. In 2020 alone, we’ve gifted thousands of shirts to virtual Miles for Melanoma participants, outfitted every wonderful kiddo at the 2020 Pediatric Melanoma Summit, offered up raffle items to raise funds at Virtual Galas and sent care packages to patients and families needing more support this year. It’s an incredible partnership that truly puts people first.
2020 also marked the third year of This is Brave, our annual T-shirt fundraiser for the MRF. It all began when a young girl here in Minnesota stepped up and reminded us all of the importance of advocating for and supporting individuals with skin cancer. When Quinn told her brother Graham to Be Brave while battling pediatric melanoma, she was reminding us all that we can do this! We can battle through and no matter what the outcome might be, we’re better when we can Be Brave together.
One in five Americans will develop skin cancer in their lifetime whether there is a pandemic or not. #CancerHasNoCurve. The good news is the MRF and the greater melanoma community continue to be strong and active. Patients and advocates have done everything from taking the message of prevention and protection cross-country, to telling a neighbor to care for their skin and get checked. You are amazing. Everything you’re doing counts!
We’re taking some time out this November to remind everyone of the important work of the Melanoma Research Foundation, and to continue to help them fundraise and support their community. 2020 has been a year full of …surprises. But cancer does not take a break, and neither will the MRF.
If you’re able, we’re asking you to support skin cancer awareness and the MRF. Here is how you can help:
Read the awe-inspiring stories of our Brave warriors and share them with your friends and family. Awareness can save lives!
Learn more about the MRF and the work it does to save lives.
Consider donating to the MRF. They’ve created wonderful virtual programs to ensure that the funding for research and education remains strong.
Purchase a 2020 This is Brave UPF 50+ T-Shirt or our Limited Edition Be Brave Umbrella for yourself or send it to someone as a sun-safe gift that gives. The proceeds go directly to the MRF.
Thank you for all that you do and remember…together we can BE BRAVE!
There are various forms of advocacy. When it comes to working with lawmakers on federal, state and local levels to advocate for new and innovative science, and policies and regulations to benefit the melanoma community, the Melanoma Research Foundation (MRF) leads the charge. They’ve helped increase melanoma research funding for all types of melanoma—including mucosal, ocular and pediatric—while improving access to quality care and skin cancer prevention activities. Some of its most notable accomplishments include preserving the indoor tanning tax, age restricting indoor tanning, and pushing for access to sunscreen in schools.
We are proud to be a part of that. For the past two years, a member of the Coolibar team has traveled to Washington D.C. to share their personal story and experience with melanoma. It’s an honor to join individuals from across the country to speak to our state representatives about the importance of skin cancer awareness and funding. Together, we’ve helped allocate millions of dollars to life-saving research. We welcome everyone with a skin cancer story to consider joining the MRF in Washington D.C. when we can all come together again. You can learn more here: https://melanoma.org/how-to-help/advocate/
The Melanoma Research Foundation (MRF) is the leading non-profit organization dedicated to eradicating melanoma by accelerating medical research. They are committed to advancing a broad scientific agenda across the disciplines of prevention, diagnosis and treatment.
From 1998 to 2020 the MRF grant program awarded 200 competitive, peer-reviewed programs across 75 institutions totally more than $18.8 million dollars. And they did that with your help!
The MRF distributes its research support amongst a vast array of individuals ranging from medical students all the way up to senior investigative teams. And they don’t limit it to cutaneous melanoma (the kind most are familiar with), they also fund rare subtypes including uveal, mucosal and pediatric melanoma.
There are five types of grants that YOU are helping fund when you support the MRF…
“So many of the patients that reach out to us are just looking for a new answer. A new path forward through their diagnosis. Being tuned into cutting-edge science and being connected to leading researchers allows us to point them down paths to information and clinical trials that ARE saving lives.”
Remember, every dollar utilized to fund research and science goes toward saving lives and giving people hope. TOGETHER WE WILL!
One of the most important messages the Melanoma Research Foundation shares is:
“You Are Not Alone.”
Melanoma is diagnosed in more than 196,000 Americans each year, and the numbers continue to rise across all races, ages and genders. Anyone can develop skin cancer. One of the MRF’s key roles is to support newly diagnosed patients, survivors and caregivers.
Doug Brodman, current board member, turned to the MRF as his first source for information and help when he was first diagnosed:
“Our family realized we needed to educate ourselves about this disease in order to better understand and prepare for the battle ahead. That’s when we discovered the Melanoma Research Foundation.”
“You have been given a diagnosis, not a death sentence.”
When found early, melanoma is one of the most treatable cancers. In later stages, treatment may be more challenging but no matter how advanced your diagnosis is, the MRF has a plan for you. They’ve carefully outlined what you need to know, what you need from your treatment team, advice to help you get through appointments, access to information about clinical trials and financial assistance, and more. If you need it, it’s there. If it isn’t there, the MRF is connected with an entire community of medical professionals whose life’s work is to provide life-saving care.
Knowing what to do and who to talk to is huge, but many people will tell you the thing that got them through was the community. Patrick Guddal, melanoma survivor, MRF advocate, and founder of Connect Melanoma, likes to say:
“The skin cancer community is like a club that you never ever wanted to be admitted to. But once you’re there you never leave. The friends you meet and connections you make start to feel like home. I’m forever grateful for their role in my life.”
There are a number of ways the MRF brings the community together. It hosts an online patient forum where you can connect with other patients and caregivers. It holds ongoing patient & caregiver meetings to provide opportunities to learn from leaders from major academic medical centers. It partners with other organizations like CancerCare, Imerman Angels and Patient True Talk to connect people to support groups or one-on-one help.
If you are, or know someone who is newly diagnosed, we strongly encourage you to visit the MRF’s Patients & Caregivers page. It can make all the difference in helping navigate a diagnosis.