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SavageMan Competitors Brave the Ultimate Triathlon Course for Melanoma Awareness

The 7th annual “Win-The-Fight” SavageMan Triathlon Festival at the Deep Creek Lake State Park in western Maryland attracted nearly 1100 elite athletes from 30 states and several countries including Great Britain, Australia and New Zealand on September 14, 2013. Athletes competed for more than a medal as the event raised vital funds for the Joanna M. Nicolay Melanoma Foundation, a voice for melanoma prevention, detection, care and cure.

According to the Foundation’s President, Greg Safko, “The ‘Win-The-Fight’ SavageMan Triathlon Festival has garnered much international attention as arguably the world’s toughest and most savage triathlon at the half Ironman distance.” Besides attracting the world’s most accomplished triathletes to test themselves and compete in the “#1 Hardest Race on Earth!” as rated by Triathlete magazine, the event also informed athletes, spectators and donors that melanoma skin cancer is the most common cancer among young adults ages 25 to 29, and if not prevented or detected early, is extremely formidable. “We’re very proud that our signature “Win-The-Fight” fundraising event for the Foundation is supported by a multitude of athletes, team members and sponsors such as Coolibar, to further the JMNMF mission of melanoma education, advocacy and research,” said Safko.

JMNMF President, Greg Safko (right, in blue) cheers on fundraiser and Team Win-The-Fight member, Mark Himelfarb of Lititz, PA, up the Westernport “Wall”.

The SavageMan 70.0 race features a 1.2-mile swim in Deep Creek Lake, Maryland’s largest freshwater lake, followed by the crown jewel bike stage featuring an over 6,000 foot vertical climb including the most savage ascent in all of triathlon – the Westernport “Wall”. After a 55.6 mile bike-ride, competitors run 13.1 miles on a lakeside trail and end the race with a panoramic lake finish.

Is SavageMan in your future?

U.S. Olympian Susan Williams (pictured) and 6x Ironman World Champion Dave Scott are notable finishers under the SavageMan banner – with D. Scott autographing all 1st place awards for each of seven years of the race’s history to support the JMNMF.
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Events Wellness Warriors

Lupus Walk for Hope

Every fall, the Lupus Foundation of Minnesota hosts a Lupus Walk for Hope and 5K Run in various cities throughout Minnesota as an opportunity to raise public awareness and show support for those with lupus. Chris Cronick, 2013 LFM ambassador, had the opportunity to attend the first of three walks this past Saturday in Minneapolis, MN. Chris shares her heartfelt appreciation for the support and education stemming from the first community event highlighting lupus.

We just wrapped up the 16th annual Lupus Walk for Hope and 5K Run/Walk here in the Twin Cities last weekend. Since its inception in 1998, the Lupus Walk for Hope has generated over a half a million dollars that has gone directly to fund lupus research. The event was a huge success with record breaking attendance of over 1,000 runners and walkers. Many smiling faces, lots of camaraderie, positive energy flowed, and everyone donned purple for lupus awareness. A huge thank you goes out to everyone who participated. I was amazed at the love and support I felt that day. It’s definitely an experience I will never forget.

It was an absolutely perfect day. Festivities started at 9 a.m. with crispness in the air that reminded me fall is definitely here. It was about 50 degrees with a cool breeze and the sun brightly shinning. As you may have read in my last post about having lupus, as much as I love a beautiful day, the sun isn’t necessarily my BFF. We have a love/hate relationship.

Since being diagnosed with lupus, I need to strategize my game-plan for each day when it comes to sun exposure. Lupus is an autoimmune disease that attacks all sorts of organs in your body, including the largest organ, the skin. Aside from the sun causing a flare, approximately two-thirds of people with lupus will develop a type of skin disease called cutaneous lupus erythematous. Skin disease in lupus may cause rashes or sores (lesions), most of which will appear on sun-exposed areas such as the face, ears, neck, arms and legs. A high percentage of people find their disease is aggravated after being exposed to ultraviolet (UV) rays from sunlight or artificial light.

Thankfully, we can take preventative measures to stay sun safe outdoors:

• Seek shade, especially between the hours of 10 a.m. and 4 p.m.
• Wear sun-protective clothing and broad-brimmed hats
• Use plenty of broad-spectrum sunscreen, with at least SPF 30

The walk was held at French Regional Park in Plymouth, MN. Luckily, a well-shaded pavilion area was nestled right in the middle of the park. The walking trails were also covered with beautiful, large trees, so my husband Patrick and I both were able to stay out of the sun for a large portion of the day. When we were in the sun, we used sunscreen and wore our Coolibar clothes.

Patrick and Chris

I took the layered approach and wore the women’s Fitness Jacket over the Vera Resort T-Shirt. He wore the men’s Fitness Jacket with his LFM running t-shirt and the men’s Fitness Pants. My team also sported purple feather boas and butterfly bandanas, Cronick’s Chronic Crue signature accessories. The clothes were absolutely perfect for the weather and occasion — light-weight, protective and comfortable. These items are our favorites.

I’ll be wearing Coolibar again as we have two more walks to complete: one in Rochester, MN, September 28th as well as Duluth, MN, October 5th. I’d love to see you there.

Chris Cronick – LFM Ambassador

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Wellness Warriors

An Ambassador for Lupus

Chris Cronick, the 2013 Lupus Foundation of Minnesota Ambassador, is a role model for us all. A fitness coach, spin instructor and motivational speaker, Chris has triumphed over some major health obstacles, and still maintains a positive attitude.

Hi, my name is Chris Cronick. I am sharing my story, raising awareness of lupus, and kicking-off this year’s Lupus Walk for Hope & 5K Saturday September 14th, at French Regional Park in Plymouth, MN.

I’m 38, and I have rheumatoid arthritis and celiac disease, both of which are autoimmune diseases. I’m also the proud recipient of six artificial joints. Apparently I wasn’t quite finished adding on to my list of ailments because back in 2010, I suddenly became very sick and spent six months in and out of different hospitals. Many tests were done and finally, I was given a diagnosis of lupus.

Your body’s immune system is designed to protect you from disease and infection. If you have an autoimmune disease, your immune system mistakenly attacks healthy cells in your body. Lupus is an autoimmune disease that affects many parts of a person’s body including: kidneys, heart, lungs, brain, blood and the largest organ of the body, the skin. Those of us with lupus MUST stay out of the sun or we risk a flare. A flare is a period of heightened disease activity which can range from mild to very severe, requiring hospitalization.

Case in point: Back in September of 2011, just one year after I was diagnosed with lupus, I learned my heart valves were damaged from a lupus related infection for which I would need open heart surgery. That is how crazy lupus can be. Fortunately, I was able to make a recovery that is nothing short of miraculous because now, I am a Motivational Speaker, Fitness Coach and Spin Instructor. You can learn more of my journey at: http://chrisinspires.com/.

Health and wellness are true passions for me and I do everything in my power to stay strong and healthy. I’m super excited to finally feel well enough to volunteer and raise awareness for this life altering disease which is what lead me to the Lupus Foundation of Minnesota. LFM has been a tremendous support to me in many ways and a partner in my journey. In fact, while there, I was first introduced to Coolibar and it’s literally been a life-saver. I had no idea a company like this existed.

Prior to lupus, I was on several medications for rheumatoid arthritis that made me highly photosensitive. If I were out in the sun, I could burn more quickly and more intensely. Now that I have lupus, not only am I still on those same photosensitive medications, I must avoid the sun altogether to avert flares. Yes, it’s a double whammy but staying out of the sun is one way I can manage this disease. With that said, it’s not always so easy.

I’m fairly young and active, even though my body sometimes makes me think otherwise. If I’m feeling good on a beautiful summer day, I’d rather not sit inside for fear of a flare–especially because I live in Minnesota and we only have a three-month long summer! I want to get out there and enjoy the weather. Contrary to those who think we have snow year round, it gets very hot and humid here and to be outdoors in a traditional hoodie or long-sleeve shirt can be miserable. I’ve had the hardest time finding light-weight, comfortable, and fashionable clothes for outside until I discovered Coolibar. To know Coolibar is blocking 98% or greater of both UVA and UVB rays, and the clothes are also cool, is a bonus.

Coolibar has fast become a staple in my wardrobe. The fit, the feel and the function – I can’t wait to share my favorites with you all! I will be sporting some at our upcoming Lupus Walk for Hope & 5K next weekend. If you’re in Minnesota, join us for the Lupus Walk for Hope in any of these three areas.

Twin Cities (September 14); Rochester (September 28); or Duluth (October 5)

More to come soon.

-Chris Cronick

Learn more about the Lupus Foundation of Minnesota.

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Wellness Warriors

24 Marathons in 24 Days to End Childhood Cancer

After a medical miracle in his own family, Brian Gruender wanted to raise awareness and funds for pediatric cancer. Brian is a father of four and president of the Snowdrop Foundation, which provides scholarships to college bound pediatric cancer patients, while also raising awareness and funds for the continued research efforts to find a cure to childhood cancer. Despite his busy schedule, Brian was determined to do something for the children. So this summer, Brian completed 24 marathons in 24 consecutive days.

“The number 24 is symbolic because it’s the number of cancer beds at Milwaukee Children’s Hospital and the number of hours we have each day to complete our runs,” said Gruender. This event brought national attention to pediatric cancer.

Brian Gruender holding the American Flag as he heads for the finish line of his last 24-4-24 marathon.

When Coolibar heard about Brian’s mission and the extensive training involved, we decided to help him with sun protection. “I used the short sleeve shirt during my 24 marathons in 24 days event, which included several 90 degree days,” said Gruender.  “It kept me protected from the sun’s harmful rays and gave me peace of mind, allowing me to concentrate purely on running.”

This October, Brian hopes to complete another feat. He, along with three others, will be running 165 miles over four days to raise awareness and funds for the Foundation. Each day they will run to honor a child battling cancer in their home state, Wisconsin. On the fourth day, the runners will arrive at Milwaukee Children’s Hospital to kick off Courage Over Cancer (Fund-urance Run), a 5K run open to the public.

We wish Brian and his team the best of luck this fall! To learn more about the Snowdrop Foundation, visit http://snowdropfoundation.org

To learn more about Coolibar Sun Protection You Wear, visit http://www.coolibar.com

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Routinely Check Skin Wellness Warriors

A Love Story From the Road to Healthy Skin Tour

On its sixth year, the Skin Cancer Foundation’s Road to Healthy Skin Tour continues to travel across the country providing free skin checks to the public. This mobile tour kicks off in the New York City area in May for Skin Cancer Awareness Month and concludes end of August on the West Coast.  Since the tours inception, volunteer dermatologist have performed over 16,000 skin checks, detected nearly 7,000 suspected cancers and precancers and 295 possible melanomas. Tour Event Managers Christie Farhat and Chris Alvarez have traveled with the Tour for five years and four years respectively.  Together, they are making a difference in the fight against skin cancer.

In 2009, Christie was in Miami for a screening event and was having difficulty finding parking for the Tour RV. A gentleman, who was a hotel manager where she was staying, stepped forward to help her out. It was Chris and they’ve been together ever since! Chris joined the Tour team the next season and the two of them have been making a difference together around the country year after year.

This year, Christie and Chris wore Coolibar UPF 50+ clothing for their nation-wide tour. Having to set up each of the 50 events around the country themselves, durability is important. Comfort is also a priority since they drive long distances often. “Christie and Chris like Coolibar fabrics, find they wash well and are very easy to wear,” said Whitney Potter, Director of Special Projects at the SCF. Christie’s favorite item is the lightweight Water Jacket and Chris loves the Plaid Shirts! “They’ve both received a lot of compliments on their attire — mainly from the volunteer dermatologists who recognize the brand and appreciate its protection from the sun’s damaging ultraviolet rays,” said Potter. In the spirit of skin cancer prevention, “covering up” with Coolibar is key for Christie and Chris since they spend a lot of time outside in the summer sun during the Tour season.

For more information on the Road to Healthy Skin Tour, visit www.SkinCancer.org/Tour

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Inside Coolibar

Coolibar Employees Visit AAD’s Camp Discovery

Coolibar had the pleasure of meeting the youth and staff at the American Academy of Dermatology’s Camp Discovery on July 10, 2013. Camp Discovery offers youth with skin conditions the opportunity to spend a week among young people who have similar skin conditions — free of charge — with a dermatologist referral.

Coolibar employees arranged a scavenger hunt for the teens and counselors, which eventually led to the beach front where volunteers were giving away Coolibar sun hats and UPF 50+ swim shirts. Many campers immediately put on their new shirts (a huge compliment from teenagers) and dived right into the water.

Camp Big Trout, located at Camp Knutson in Crosslake, Minnesota is one of six AAD Camp Discovery locations. Each year Coolibar also donates sun protective hats to all Camp Discovery locations, providing sun hats to 350 kids.

Check out our album below from Coolibar’s road trip to Camp Discovery.

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SunAWARE

What is Ichthyosis? The answer may surprise you.

By Maureen Neville
Communications Director
FIRST, Foundation for Ichthyosis and Related Skin Types

When someone discovers that I am the Communications Director for FIRST, the Foundation for Ichthyosis & Related Skin Types®, typically, I am greeted with the same three questions: “What is ichthyosis?”, “Is someone in your family affected?” and…“What brought you to FIRST?” From a clinical perspective, I may respond by saying: ichthyosis is a family of genetic mutations of the skin characterized by dry, scaling skin that may be thickened or very thin, and most forms of the disorder are very rare. Each year, more than 16,000 babies are born with some form of ichthyosis and it affects people of all ages, races, and gender. Ichthyosis may also severely affect someone’s emotional health and it can lead to a host of other illnesses such as bacterial infection, heat stroke, and immobility.

And, no, I do not know anyone on a personal level that has been affected with ichthyosis.

However, there is more to the story – much more. So what is ichthyosis? It is a genetic skin disorder, yes, but it has also been the catalyst that has lead me on a worldwide journey of meeting the bravest and most inspirational people of my life – a young mother from Illinois, whose baby was born with ichthyosis last December, who has not only accepted her fate of grueling skin care routines, a daily parade of doctors and therapists, and caring for an infant through unprecedented surgeries – but considers it a wondrous blessing; one that she is delighted to share, daily, with the entire world. The young woman from Australia with ichthyosis who has turned her strife into a worldwide “appearance advocacy” effort, changing the way people perceive disability by offering words of empowerment and guidance to all those who “look different” everyday. The teenager from Canada with ichthyosis who only recently shared with us his moment of enlightenment – when he finally realized that because he beat the odds of not “dying by age three,” as doctors had predicted, his life was not a merely ordinary existence, but a destined one. Or, the twenty-year old woman from Arkansas who is the second oldest living individual, with one of the most severe mutations of the disorder – who has not let ichthyosis steal a single moment of her life – and in fact, is now expecting her first child. And of course, the team of medical doctors, stowed away in a clinical laboratory at Yale University, for nearly 31 years, fueled by one and only one thought: finding a cure. Each day, they defy the odds and travel their paths alongside a disorder for which, presently, there is no cure. And they never lose sight that accompanying their every step is hope, support, and the tireless team of advocates at FIRST.

In fact, it is their hope that is the driving force behind mission of FIRST – to educate, inspire, and connect all those affected by ichthyosis. It is their hope that inspires this 31 year-old organization, that has affected so many lives, to be the only national non-profit foundation located in the United States dedicated to assisting families affected by ichthyosis; the only patient advocacy organization funding medical research specifically targeted toward finding advanced treatment as well as a cure, and an organization that has funded 13 projects granting over $1.4 million in research since 2006.

And it is their hope that expands the definition of ichthyosis to the far corners of the human experience – far beyond the diagnosis of a rare genetic disorder.

So what is ichthyosis? It is a message; a call for human compassion; an invitation to experience the authentic awareness of “other.” It is the doorway to unprecedented medical advancements and, most remarkably, it has become an opportunity for worldwide connections…and the chance for global unity.

But the question that is my absolute favorite to answer is this, “What brought you to FIRST?”
If only in these moments I had glamorous, compelling tale of high seas adventure that lead me to their door – but actually, I do not. In truth, the position for Communications Director was actually posted online. The beginning, clearly, is not exactly what you may call riveting. However, as I would not know for several months whether or not the position would be mine, I had the opportunity to discover that this organization was filled with the extraordinary. And what I can also tell you is that I never dreamed, when I was first invited to join the staff, a mere seven weeks ago, having neither friend nor family member affected with ichthyosis – that I would be brought into a community that has felt like the warmest embrace a family could offer.

It is a privilege to work alongside this team of intelligent, passionate and unwavering optimists and I will be eternally grateful for the opportunity to meet all of the unforgettable individuals with ichthyosis; to answer questions about the disorder and to spread the word about our work, our mission and, above all, to raise awareness for this rare disease, so that someday I may be answering the question: When did they find a cure for ichthyosis?

The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is invited as a guest blogger and does not endorse or serve as a product representative for Coolibar.

Maureen Neville - FIRST
Maureen Neville – FIRST

 

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SunAWARE

Isn’t it Time to Live SunSmart?

This month is Melanoma Awareness Month, which provides an excellent opportunity for foundations such as ours, LiveSunSmart.org, to educate the public about the importance of living “Sun Smart.” We know that melanoma is very curable when caught early, but we want to teach everybody ways to minimize their risk when out in the sun without curtailing the fun! It’s pretty simple, actually, we know that staying in the shade and avoid the peak sun hours when possible isn’t always realistic, so use your sunscreen every day, and reapply it often. Wear hats – with the big, wide brims if possible–wear sunglasses and protective clothing. Get your skin checked regularly, learn the signs of melanoma and most importantly make sure your friends and family do the same!

But, melanoma awareness isn’t just limited to the month of May. We want you to protect yourself year-round by making the proper application of sunscreen a routine part of your day, and encourage your family and friends to do the same. That means whether you are on the ski slopes or the beach, the athletic field or the construction site—if you are spending time outdoors eating, recreating or spectating, sun protection is essential. We are all at risk because skin cancer does not discriminate against color, race, ethnicity or gender.

At Live SunSmart.org, we are passionate about our mission and work diligently throughout the year to educate everyone on the importance of early detection and the prevention of melanoma. The foundation honors my father Ray—an athlete, community leader and friend to many—who tragically lost his battle with melanoma at the age of 53. Ray loved interacting with everybody and the best way to celebrate his life is to create a dialogue about skin cancer prevention that could save others.

Nobody should ever have to suffer from skin cancer the way my father – and consequently all of us – suffered. Just a few simple steps integrated into your daily life can change behaviors that may reduce your risk.

The best way to safeguard your skin is to:

• Wear a broad spectrum sunscreen of at least SPF 30 every day
• Apply properly and reapply often
• Wear protective clothing, hats and sunglasses
• Get annual skin cancer screenings
• Tell your family and friends to do the same

At LiveSunSmart.org, we offer a variety of programs to inform the public about easy steps to safeguarding one’s health.

Did you know that UV radiation can damage the eye, affecting surface tissues and internal structures, such as the cornea and lens? Long-term exposure to UV radiation can lead to cataracts, skin cancer around the eyelids and, in some cases, can contribute to ocular melanoma. Our Look SunSmart™ program, encourages people to wear sunglasses year-round to protect your eyes and the surrounding skin areas from UV light.

Another program, Team SunSmart™, was designed to promote the health and wellness of student athletes by making the application of sunscreen a normal pre-game routine. After all, athletes often are outside participating in sports during the peak sun exposure hours. Packing sunscreen in an athlete’s equipment bag should be as important as packing cleats, water or a sports drink. A change in a student athlete’s behavior now will ensure a healthier future since anywhere from 23% – 75% of our lifetime UV exposure occurs before the age of 18.

Ski SunSmart™ works with ski resorts, outdoor winter sports pavilions, and skiing and snowboarding organizations to encourage winter sport enthusiasts to make the application and reapplication of sunscreen a normal routine on the slopes. At 8,000 feet above sea level, you are exposed to 40% more UV radiation than you are at sea level.

Another exciting program we have aims to educate non-medical and salon professionals to recognize the signs of melanoma. Pro SunSmart™ trains these professionals to spot signs of change in their regular customers or notice unusual moles in new customers. Whether it’s during a back adjustment, massage, physical therapy session, athletic training, shampoo and styling, or a pedicure, these professionals have the opportunity to visually examine our backs, scalps and bottoms of our feet.

Throughout the year, we offer on-site school and workplace skin screenings with Board-certified dermatologists. This health initiative helps to demystify the screening process and to broaden everybody’s awareness about the necessity of annual skin checks. So far, we have detected dozens of cases of skin cancer, several of which were melanoma.

There are so many positive benefits to spending time outdoors in the sunlight. At LiveSunSmart.org, we want to create awareness about melanoma and all skin cancers, without creating fear by offering you realistic strategies that allow you to live a sun-compatible life. That’s why we call our annual gala, Celebrate Living SunSmart! This year’s event, which helps support the development and implementation of our family of Live SunSmart programs, will be held on May 30th at Maritime Parc in Liberty State Park, NJ. We will be honoring NFL Coach and CBS NFL Today analyst, Bill Cowher for his tremendous efforts to educate the public, especially men, about the risks of melanoma. As a testament to his diligent work, NFL Commissioner, Roger Goodell will be on hand to present the Apollo Award. Set against the backdrop of the amazing New York City skyline, the gala promises to be a wonderful night of excellent food, entertainment and awareness.

If you would like to learn more about our organization, support our efforts or attend our Celebrate Living SunSmart Gala, please visit www.livesunsmart.org.

Teri Festa is Executive Director and Founder of LiveSunSmart.org, formerly known as the Ray Festa Melanoma Foundation, based in Montclair, NJ.

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Inside Coolibar Wellness Warriors

A rising need for skin cancer prevention resources in Tanzania

Cancer care in Tanzania is a great challenge to both the government and the citizens due to limited resources and facilities. Tanzania is increasingly facing a dual problem of communicable and chronic illnesses such as cancer. Those with albinism in Tanzania are especially suffering from skin cancer due to their sun sensitivity.  The Tanzania Albino Society believes the total number of those with albinism in their region could be more than 150,000.

The East African Medical Assistance Foundation (EAMAF) has been assisting Tanzania with cancer care through Kilimanjaro Christian Medical Center (KCMC) for many years, mainly training Radiologists who are now placed all over the country in public and private health facilities. Secondly they have help equip KCMC with diagnostic equipments and facilities. Despite contributions thus far, helping people with Skin Cancer prevention, especially for those with albinism, is paramount.

Global Health Ministries in Fridley, MN who arranges the safe arrival of the EAMAF supply containers in Africa provided a route to get approximately 800 Coolibar sun protective items into this area to assist with skin cancer prevention efforts. This effort was imperative to many as UVA and UVB rays contribute to skin aging, cataracts and skin cancer.

We at Coolibar wished to share the cheerful photos of when the donated product arrived! Also, a special thanks to our Coolibar colleague Ben Socwell for introducing Coolibar to these life changing organizations!

Photo album of presentation of Coolibar clothing and hat to Albino National Leadership and Member of Parliament in Dar Es Salaam, Tanzania:

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Inside Coolibar

Coolibar’s Visit to Camp Discovery

Coolibar had the pleasure of spending a day at the American Academy of Dermatology’s Camp Discovery on June 25. Camp Discovery offers youth with skin conditions the opportunity to spend a week among young people who have similar skin conditions — free of charge.

Camp Knutson in Crosslake, MN  is one of six AAD Camp Discovery locations. Coolibar volunteers passed out sun hats, UPF 50+ swim shirts and UV goggles to the children and counselors in attendance. Coolibar also donated sun protective hats to all Camp Discovery locations, providing sun hats to 350 kids.

Check out our album below from our road trip to Camp Discovery.

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