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Light the Night, Leukaemia Foundation

Celgene is proud to again be the key partner of the Leukaemia Foundation’s annual Light the Night.

More than 60,000 people are living with leukaemia, lymphoma, myeloma or a related blood disorder, and another 35 people are diagnosed every day.

Thankfully, the Leukaemia Foundation is committed to fighting this terrible statistic as part of a quest for a blood cancer free future. Light the Night events raise funds and hope to support Australian families affected by blood cancer.

Join us at one of the walks across the country on Friday October 7, 2016 to brighten the lives of families affected by leukaemia, lymphoma and myeloma.

Find out how to take part

Over the past decade, many new and effective treatment options for multiple myeloma have been introduced, allowing more patients today to effectively manage their disease and get back to living life on their own terms. Many are doing things that challenge conventional perceptions of what myeloma patients can do. These myeloma patients are making history and overcoming their disease to achieve major goals in their lives. We wanted to highlight some of the inspirational stories that we’ve recently heard.

Stan Wagner

Stan Wagner

Four years after being diagnosed with myeloma and three years after going into remission, Stan Wagner continues to go for monthly blood tests but, for the most part, doesn’t think about his myeloma much. He’s focused on giving back instead.

When he learned that a friend wanted to climb Mt. Kilimanjaro for a larger purpose besides herself, Wagner brought the idea to the Multiple Myeloma Research Foundation and helped develop the Moving Mountains for Multiple Myeloma fundraising event. Wagner decided to participate himself and trained by going on day hikes in upstate New York. In January 2016, Wagner made the 8-day hike through high elevations and low temperatures to the highest freestanding mountain in the world.

“Being a myeloma patient doing things like this shows that myeloma is not the end of the world,” Wagner said. “Hopefully, I can inspire other myeloma patients to get out of their shells and to keep doing what they want to.”

Mark Herkert

Mark Herkert

Although Mark Herkert has never been in remission since being diagnosed with myeloma five years ago, his treatment has allowed him to become healthy enough to complete a 5K run to support the Multiple Myeloma Opportunities for Research & Education organization, becoming a top fundraiser for the event.

Since that first race, Herkert has gone on to run the Lavaman Waikoloa Triathlon and the 2015 New York City Marathon, raising more than $70,000 for myeloma research through all his efforts to date. Next year, he plans to follow the footsteps of myeloma patients like Wagner by participating in the MMRF Mt. Kilimanjaro Trek.

“I felt like maybe this is what I was meant to do,” Herkert said. “I am contributing and getting in great shape at the same time. My goal is to encourage others to be part of the solution and to show others with myeloma that the sky can truly be the limit.” 

Alex Clark

Alex Clark

Being in and out remissions several times since being diagnosed with myeloma in 2011 hasn’t stopped Alex Clark from spending time outdoors, including camping and mountain climbing. When his disease went into remission for the first time, he took a road trip to Oregon, spending six weeks hiking, backpacking and mountain climbing in the wilderness. During that first trip, he logged over 300 miles and scaled five big summits.

More recently, Clark spent a rainy February weekend camping in Wisconsin’s Northwoods on the edge of Lake Superior. Clark said that he finds peace being in nature and has come to recognize that he is strong enough to overcome whatever happens next in his journey.

“I have a tattoo on my arm that says ‘don’t panic,” Clark said. “I try to think about that phrase a lot. Things are never as bad as they seem, as long as you don’t panic and keep doing the things that you enjoy.”


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For a long time, Élodie Laurent loved nothing more than baking for the people who visited her French café. But that joy was taken away by something out of her control—psoriasis.

She has the obvious physical symptoms of the disease, including the red, scaly patches on her face and arms. But a closer look into her day-to-day life reveals the emotional and psychological toll that this immune-inflammatory disease has taken on her: she is self-conscious about her appearance, imagines her disease to be much worse than it is and actively avoids family and friends. Having been forced to give up her job as a pastry chef, she lives a solitary and isolated existence in London.

Although Élodie is a fictional character—the protagonist of the new short film Millefeuille (A Thousand Leaves)—her story is inspired by psoriasis and psoriatic arthritis patients around the world. The movie was produced following extensive research in this space to raise awareness of the sometimes hidden burden of psoriasis.

Millefeuille movie


Typically, when filmmakers set out to educate on a topic close to their hearts, they lean toward a documentary style. But here, they instead set out to make a short drama, aiming to attract a wider audience and a patient community who may have given up hope that life with psoriasis could be different.

“It’s been a really fascinating process doing this,” the film’s director Alistair Clayton said. “It’s not something I’ve seen done before.”

Millefeuille movie

To learn more about Elodie’s condition, read “The Reality Behind Millefeuille.”

Over 100 million people worldwide—including some 14 million Europeans—have psoriasis. Beyond skin effects, up to 30 percent of people living with psoriasis are likely to develop psoriatic arthritis, which can lead to painful swollen joints and a loss of physical functioning. The toll of the disease is often hidden from the public; patients like Élodie wear sleeves and hats to strategically cover their skin lesions and hide from friends and family when their psoriasis flares. Hard-to-manage symptoms like itching can often become hugely burdensome for some patients as we see in the film.

Millefeuille is an accurate portrayal of the experiences that commonly affect those living with psoriasis,” said Nikhil Yawalkar, a dermatologist at the University Hospital Bern in Switzerland who served as a consultant on the film. “Many people with psoriasis isolate themselves because of such a deep sense of shame, embarrassment and low self-esteem, and Élodie’s experience is reflective of this.”

Indeed, 88 percent of psoriasis patients said their condition affected their emotional well-being according to surveys conducted by the National Psoriasis Foundation between 2003 and 2011. Most psoriasis patients said they experienced anger, frustration and helplessness due to their disease.

Millefeuille movie


But the film also portrays the hope that remains for people living with psoriasis. When Élodie befriends Holly, an outgoing young neighbor, she finds understanding and acceptance and discovers that Holly is a ‘millefeuille’ herself—deep, sweet, with many layers. Holly helps Élodie rediscover her passion for baking and place in the world.

“We’re delighted to see a story that shows us the value of looking beyond the disease and seeing the person.”


“It’s fabulous to see psoriasis getting this type of creative exposure,” Christine Janus, CEO of the International Alliance of Dermatology Patient Organisations, said. “Most people love cinema and a good story, and we’re delighted to see a story that shows us the value of looking beyond the disease and seeing the person.”

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Athletic, 6-foot-5-inches and in his 30s, Alex Clark is not the typical cancer patient. Clark is living with multiple myeloma and is eager to share his thoughts on how myeloma patients can spread awareness of this rare disease, the invisible mechanics of cancer culture and what is troublesome about the healthcare system today.

How long ago were you diagnosed with multiple myeloma? How has your life changed since then?

In late 2011, after ignoring symptoms of myeloma for about 10 months or so, I finally dragged myself into the emergency room. I was an overactive 26-year-old who thought that he was invincible. Some friends and I had climbed Mt. Baker in Washington about a month before I collapsed in the ER. When I got home from that trip, my body felt like it was crumbling to pieces. By the time I was finally diagnosed, I had lost 60 lbs, my heart rate was dangerously high, and my kidneys had failed. I avoided doctors almost to my death. But I’ve been lucky enough to come out on top. I’m the same person, I’ve just learned to slow down and be more present to what’s going on in my body. I place a higher value on subtle beauty.

Alex Clark

Multiple myeloma patient Alex Clark continues to enjoy camping and being outdoors despite living with a rare disease. Source: Alex Clark

Were you able to enjoy the outdoors again?

After treatment, I went into remission and the only thing that I wanted was to be outside, to be self-reliant. I road-tripped back to Oregon to reclaim my life and spent six weeks in the woods hiking, backpacking, camping, climbing peaks and talking to nature. That was the best medicine for me. Treatment keeps me living, but nature gives me life. Your perspective changes monumentally when you become a patient. You end up more self-focused and inward looking. The wild always reminds me of my insignificance. It provides an important perspective about how fragile our lives really are.

Do you think the people around you understand what you are going through?

Not really. I don’t think many people actually know what myeloma is. When I tell them I’m going to the Mayo Clinic for myeloma treatment, I usually just whittle my story down to “I have cancer.” The conversation can get longer and be more melancholy than most people can handle. The specifics of myeloma get cumbersome. Even I don’t fully understand what’s happening to me. Luckily, I have some amazing doctors on my team who understand this disease better than anyone ever has in the history of medicine.

Cancer is scary. Most people want to plug their ears and pretend it’s not there. So I’m trying to use my voice to call attention to it.

Do you think the patient voice is important in the fight against myeloma?

Cancer is scary, and most people want to plug their ears and pretend it’s not there. So yes, I feel like it’s important to use my voice to simultaneously spread a both a sense of urgency and a feeling of calm. We’re dealing with this. The more we talk about it, the quicker we can find solutions. Patients are so much more than numbers on a spreadsheet, but if you don’t speak up it’s easy to become a statistic.

Were there people who helped you in your fight with myeloma?

People like to tell me I’m so brave for fighting cancer. But to be honest, I don’t feel like I’ve done a single thing. I lie in bed and take medicine. The doctors and nurses who see the human effects of this disease on a daily basis, they’re brave beyond comprehension. I sometimes imagine myself lying in a hospital bed and my disease as this specter coming to attack me. But it slams into my army of nurses and doctors. Cancer has introduced me to some of the world’s most caring, brilliant, beautiful souls. I owe them my life.

Does every myeloma patient you know have access to great doctors like you?

I doubt it. I’m incredibly lucky. It blows me away that, as a society, we can still deny a person access to the system because of financial or logistic obstacles. If we truly have the best healthcare system in the world, why do we allow people to just disappear rather than treating them as a valuable resource? With every new case we learn more about myeloma and yet people still treat proper healthcare like a privilege reserved for those who deserve it. Healthcare is a human right. We all deserve it. The way people still debate this is insane.

Alex Clark on mountain

While climbing a mountain in 2011, Alex Clark experienced pains across his body that he now recognizes as the first symptoms of multiple myeloma. Source: Alex Clark

Are you optimistic about your future?

Of course! When I was first diagnosed in 2011 there were only a handful of treatments. But each year, I’ve seen more myeloma treatments being investigated and made available. And that gets me excited about the future. I don’t panic. I live my life and take solace in the fact that cancer is not a death sentence. In a lot of ways, for me, it was a blessing in disguise.

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