The University of Colorado Cancer Center is at it again this year, gathering a group of 12 employees or members who will rappel 44 stories to raise money and awareness for Colorado-based cancer research. TheOver the Edgeevent is put on by theCancer League of Colorado(CLC).
Ashton Villars has always been a problem solver. As a competitive athlete in basketball, waterskiing, and tennis and an actual rocket scientist, Villars has tackled every challenge in life head on — including his prostate cancer diagnosis. Now, he’s bringing that same problem-solving spirit to supporting cancer research.
Like most people, Arnette Schouten has been touched personally by cancer. One of her cousins is in hospice following a battle with melanoma; her sister-in-law had a long fight with breast cancer; and Arnette herself had early symptoms of ovarian cancer that were caught in time for effective treatment.
In July 2019, Emily McClintock Addlesperger was on vacation in Maine with her husband, Jason, when she felt sick and was airlifted to Portland with internal bleeding. A tumor on her ovary had burst. It was Monday. On Saturday, she passed away. Emily was 44 years old.
While runs and galas that raise money for many different causes have been affected by COVID-19 there is one fundraising event that is made for social distancing, rappelling down a building. The Over the Edge event by the Cancer League of Colorado (CLC) is doing just that while raising money for Colorado based cancer research.
When you think about what defines Colorado’s Front Range, adventure sports including rock climbing are near the top of the list. More and more, biosciences and medical innovation including cancer research are high on the list, too. Now a fun event at the Denver Bouldering Club combines the two. On February 29, the 7th annual Heart & Soul Climbing Competition will raise money and awareness for research at University of Colorado Cancer Center.
“Cancer is something that has affected every member of our staff personally – you could go through the crowd at Heart and Soul and every person would have their own cancer story.
Climbing is a selfish pursuit to some extent, and this is our way to step outside our own bubble and say there’s something else going on in the world,” says John Gass, the gym’s climbing services manager.
The fun event is appropriate for all ages and ability levels, from beginners who can rent climbing shoes at the gym, to pros who will compete for $4,000 in cash prizes in the Open division. Since the inaugural event in 2014, the Heart and Soul Climbing Competition has raised just over $70,000 for cancer research through ticket sales, day-of donations, and online fundraising (if you can’t make it to the event, click to donate!).
“We’ve gotten bigger and better every year,” Gass says. “This year, we’re hoping to push the bar even higher and make it to that $100,000 mark for cancer research. If we can knock it out of the park, we can make it happen!”
CU Cancer Center researcher James Costello, PhD, promises to keep his welcome speech to 5 minutes, tops, before the 7pm finals. And you may even catch a few of his postdocs climbing earlier in the day – if you see folks in blue CU Cancer Center tee shirts, encourage your kids to ask them about their research! Pointing the flow of the climbing/research collaboration in the other direction, Denver Bouldering Club staff recently had the opportunity to tour labs at CU Cancer Center to see their money at work.
“A couple years ago, one of our employees was going through chemo at the same time he was helping with the event. It was really empowering for him and showed us all why we do what we’re doing,” Gass says.
Tickets are $55 until Feb 28 and $65 at the door. Registration includes free food and door prizes donated by event sponsors including Friction Labs, Milestone Homes, Organic Climbing, Groove Toyota Scion, Stone Brewing, Metolius, X-Cult, Escape, Rhino Skin Solutions, Honey Stinger, Brazos Wine Imports, and more.
Really, don’t be shy: “Heart and Soul takes that stress you feel at most climbing comps and replaces it with a community feel where we’re all supporting each other and supporting cancer research,” Gass says.
See you there for this truly only-in-Colorado event!
The technique known as RNA sequencing lets researchers discover which genes are turned on and off in a sample of tissue. In cancer, RNA-seq (as it’s known) is used to find the faulty genes driving the disease. But not all cells within a tumor are the same. Some may have one set of genetic drivers, while other, next-door cancer cells depend on completely different genetic changes. Even the types of cells within tumor tissue may differ, with cancer stem cells intermixed with regular cancer cells intermixed with healthy cells and immune system cells. What this means is that RNA-seq has traditionally been like taking a picture of the rainforest from 10,000 feet: You see a lot of green trees, but many things remain hidden beneath the canopy.
If Nancee Pronsati had been diagnosed with stage IV ALK-positive lung cancer a decade ago, her years of life expectancy would have been measured with fewer fingers than it takes to make a peace sign. But due to advances in genetically targeted therapies, many driven by research and testing at University of Colorado Cancer Center, Nancee is 3.5 years out from diagnosis and doing well. In honor of November’s Lung Cancer Awareness month, Nancee and her husband, Paul, are giving back to CU Cancer Center research programs that are developing the next generation of treatments against ALK-positive lung cancer.
“I was diagnosed when living in New York City and started treatment at Memorial Sloan Kettering,” Nancee says. “But my thoracic oncologist there knew I was from Denver and encouraged me to come home for treatment due to the incredible researchers and doctors here.”
In fact, CU Cancer Center has become an internationally recognized leader in the treatment of lung cancers driven by specific genetic alterations. The gene ALK is one of these alterations – when it becomes accidentally fused together with a partner called EML4, the resulting ALK-EML4 fusion gene makes the blueprint for a cancer-causing protein. CU researchers including D. Ross Camidge, MD, PhD, and Robert C. Doebele, MD, PhD have been at the forefront of testing drugs that silence the action of ALK, leading to FDA approvals for drugs like crizotinib, alectinib, brigatinib, and lorlatinib.
“I’m very active in a social media group for ALK-positive lung cancer patients, and everyone knows that Dr. Camidge is one of the only choices for a second opinion. It’s just accidental where I live. It’s been amazing to hear people from all over the country talking about the treatment here in Colorado,” Nancee says. (Many lung cancer patients access these second opinions without traveling, through CU Cancer Center’s Remote Second Opinion Program.)
One of the people Nancee and Paul met through their involvement with Denver’s ALK-positive community is Emily Daniels, also a patient of Dr. Camidge.
“Emily live near each other and walk together sometimes,” Nancee says.
During her treatments, Emily has worked with University of Colorado to set up a fund specifically supporting ALK-positive lung cancer research, along with the annual Links for Lungs golf tournament to raise for the fund (2019 sold out quick! Keep your eyes peeled for 2020). This November, Nancee and Paul decided to infuse another $100,000 into Emily’s fund for ALK-positive cancer research.
“Paul and I decided to donate to that part of the Lung Cancer Colorado Fund primarily because we liked the idea of all of the ALK-designated donations being consolidated as much as possible,” Nancee says.
“Seeing what Dr. Camidge and his team were able to do when Emily’s life was hanging in the balance – they were able to move with agility and creativity, and basically save her life – that’s a really compelling story,” Paul says. “The same thing could happen to Nancee. These targeted therapies don’t work forever, and when you see the team’s track record in figuring out what to do next, on the fly, to save that person’s life, that’s proof that our contribution is going to the right place.”
In addition to laboratory work, the fund supports the development of investigator-initiated clinical trials, a special class of clinical trial based on a researcher’s own findings or observations. Unlike trials sponsored by large pharmaceutical companies, investigator-initiated clinical trials tend to be nimble, moving promising treatment hypotheses quickly from pre-clinical testing directly into hospital settings where they can benefit patients.
“Dr. Camidge’s team is able to act quickly if they have an idea – combining existing drugs or testing some new theory – and that’s exciting for us. With a terminal disease, you want to move quickly, at the same time these other more measured approaches are being funded by drug companies,” Paul says.
In addition to skiing and craft breweries, Denver has become known for its community of researchers, doctors, and patients focused on the genetic alterations that drive lung cancer.
“These are people who are fighting for their lives every single day and they’re not just talking about it, they’re doing things. You feel a measure of pride in the community. The ferocity and passion, it’s cool,” Paul says.
It’s the ferocity and passion of people like Nancee and Paul Pronsati that will help to ensure that new treatments against the disease continue to come from Colorado.
Since its start in 1969, the Cancer League of Colorado (CLC) has raised over $16 Million dollars for cancer research and patient care in the state of Colorado. Not bad for an entirely volunteer-run organization! Maybe you’ve seen the organization’s Hope Ball, or the Race for Research, or, this year, the first annual Youth Creates Gala, which was held in the Englewood High School auditorium on August 10? Or maybe in early September, you were walking by the Convention Center, looked up at the roof of the Hyatt Regency Denver, and thought to yourself, “Hey, there’s Dinger the Dinosaur falling from the sky!” In fact, Dinger wasn’t falling from the sky – the Rockies mascot along with 192 other intrepid and compassionate souls were rappelling 39 stories from the Hyatt roof in what is certainly Cancer League of Colorado’s most death-defying event, Over the Edge 2019.
Among them was University of Colorado Cancer Center Deputy Director, the Courtenay C. and Lucy Patten Davis Endowed Chair in Lung Cancer Research, James DeGregori, PhD.
“The CLC has supported MILLIONS of dollars for cancer research in Colorado, including numerous grants to my lab. These grants have allowed us to pursue new directions in cancer research, leading to new discoveries that we believe will make a big impact on our ability to prevent, control, and treat this dreaded disease,” DeGregori says.
In fact, this was Dr. DeGregori’s second consecutive year rappelling to raise funds for cancer research. This year, he was willing to not only put his neck on the line, but also his pocketbook, agreeing to rappel even before he had secured the minimum $1,500 in donations (he would be responsible for any shortfall). Fortunately, the CU Cancer Center community came to his rescue, and Dr. DeGregori has now officially raised $1,830 for the event. And the good news is that there’s still time to get involved! Cancer League of Colorado is accepting donations to any rappeler, including DeGregori, until October 31. Longtime CU Cancer Center supporter, Gary Reece, is currently in the lead, though Mike Zitelli of team Wyoming Whisky, and Tina Lovelace of team Woodhouse Day Spa could conceivably finish strong to overtake Reece in the event’s waning minutes of fundraising).
“I’m absolutely terrified, but I did it anyway. Maybe it helped that I promised to pledge an extra $500 donation if I chickened out,” says DeGregori.
So far, the even has raised $332,642 and hopes to top $360,000 when all is said and done at the end of the month. These funds go directly toward research grants, service grants, and investigator initiated clinical trials. In the past, Cancer League of Colorado has directly funded trials including immunotherapy for relapsed women’s cancers, precisely targeted radiation therapy for pancreatic cancer, and even an innovative study exploring whether grape seed extract could slow the growth of watch-and-wait prostate cancer. Research grants have included (among many others), explorations of the intersection between obesity and cancer, a study defining the molecular damage of tanning beds, and a project looking at single cells within tumors to see how many different kinds of “cancer” are within any given cancer.
In other words, CLC funds go directly to projects that improve treatments for patients in Colorado and beyond. Many of these projects would never happen without CLC support.
So join us in donating in these last few weeks of fundraising to Dr. DeGregori or any of the other brave folks who participated in this year’s event. We may not realistically be able to help Dr. DeGregori top the leaderboard, but we can help to ensure that his studies and others at CU Cancer Center continue to make important advances against the disease.
Heather and Lauren Squire credits the University of Colorado Cancer Center for giving them a couple more years with their beloved father and husband.
“My husband was a beast,” explains Heather Squire. “Up until the very end, he was an absolute beast.”
“Beast” may be the perfect way to describe someone who would run three to four miles right after a chemo infusion. “Beast” may also be the perfect way to describe a dedicated doctor who saw his last patient exactly two months before his passing. But for Heather Squire and their daughter Lauren, the “beast” Doug Squire, was a loving and compassionate husband and father who made the most of each and every day.
It Can Happen to Anyone
After nearly 18 months of stomach issues that doctors were unable to explain, Doug Squire, MD, oral and maxillofacial surgeon, from Longmont, CO, found himself in a waiting room with his wife, Heather, to undergo a colonoscopy procedure.
“I remember what I was wearing that day,” says Heather. “The whole day is so clear in my head. It was absolutely traumatic. After just about ten minutes into the procedure the doctor came out and said, ‘we need to talk’.”
Doug was diagnosed with stage 4 colon cancer that had metastasized to his liver. The prognosis was bleak: 2 to 3 years, “if he was lucky”.
“I did not accept that. I physically and mentally could not accept that,” says Heather. “I was 39, we had a 10-year-old daughter and we had our whole life together waiting for us. I remember saying to the doctor ‘that’s not going to work for us’”.
A cancer diagnosis never crossed the Squire’s mind. Doug was only 41, extremely fit, ate well, and took care of his health. You could say he was the opposite of someone you would imagine being diagnosed with cancer and especially colon cancer.
“People think that colon cancer is just an ‘old person disease’. That is not the case. If the most freaking fit human can get it, anyone can!” says Heather.
A Long(er) Road
At the time he was diagnosed Doug was given just 2 to 3 years to live. The Squires’ were determined to beat those odds.
“We ended up going to another cancer center before we were officially connected with Dr. Messersmith,” explains Heather. “Doug said many, many times throughout his treatment that he completely trusted Dr. Messersmith and felt comfortable with him, which was the most important thing for us.”
Doug’s care team stretched state lines. His oncologist at the University of Colorado Cancer Center and his surgeon at another cancer center in Texas.
“The collaboration worked out wonderfully because Dr. Messersmith and the surgeon actually knew each other and were able to go back and forth with different ideas throughout the treatment process,” says Heather.
His treatment included surgery to slowly kill off parts of his liver. In addition, Doug went through countless rounds of radiation and chemotherapy.
“He never complained. Not even once,” says Heather. “He would actually go for runs, pump in hand, during his infusions. No one could believe he had stage 4 cancer and that’s exactly how he wanted it”
A long road (luckily) became a little bit longer when Doug hit the three-year mark after diagnosis. He even ran a half marathon in New Orleans on the 3 year anniversary of diagnosis to prove his point. However, in year four, his chemo treatments stopped working. Messersmith brought up the idea of starting immunotherapy as a last resort but, devastatingly, Doug did not qualify for the trial. Doug passed away on August 3rd, 2017 at his home surrounded by his family. He was just 46.
“Dr. Messersmith and Doug’s entire care team gave us the gift of more time with our husband, father, and friend,” says Heather. “We got an additional two and a half years to make memories and be together thanks to the care we received. Before Doug passed, we knew that we wanted to do something to give back.”
Before Doug passed, he gave Heather the instructions to sell his BMW and give 100% of the profits to Dr. Messersmith. This started a domino effect in the Squire family.
“Doug was always a very humble man. He did not want me to have a funeral. Instead, we had ‘Dougtoberfest’, a chance for friends to gather and an opportunity to raise awareness and money for colorectal cancer research,” explains Heather. “At the event, we were humbled and honored to have hundreds of people attend and we were able to create the Doug Squire Honorary Fund.”
The Doug Squire Honorary Fund supports many aspects of colorectal cancer research, including the training of future oncologists in the CU Cancer Center’s Summer Research Fellowship Program.
“This year we were able to sponsor Hannah (Frederick),” says Heather. “She is amazing! We were lucky enough to have a private lunch with her after the program was completed and really get to know her and her hopes for the future. It means the world that we were able to support her in her colon cancer research endeavors.”
“Hannah Frederick is a junior at the University of Maryland,” says Jill Penafiel, Education Manager at the CU Cancer Center. “She’s a stellar student who has a passion for research. She really enjoyed presenting her research results to Heather and Lauren Squire and Dr. Messersmith and was so appreciative of the sponsorship and connection to a colon cancer patient.”
Cartwheeling for Colon Cancer
In addition to support research, Heather has made it her life’s mission to raise awareness about colon cancer in young people.
“When Doug was going through treatment, being healthy and active remained important in our lives” she says. “I traveled frequently for work and in an effort to stay active on the road and let him know I was thinking of him, I did a cartwheel at the end of each run and sent him a photo. Now, it has grown to be an awareness effort and a unique way to get people’s attention on the topic of colon cancer.”
The instagram account Cartwheels4ColonCancer has hundreds of followers. Heather, who manages the account, has met many of the followers, heard their stories and knows first-hand her awareness passion is helping save lives.
“I have people come up and tell me ‘thank you’ for not only raising awareness of colon cancer in young people but also encouraging people to be proactive about their health,” says Heather. “If something feels off in your body, don’t dismiss it!”
It has been just over two years since Doug’s passing. Since then, Heather and Lauren have dedicated their lives to awareness and funding life-saving cancer research. They have no plans to stop in the future.
“We move forward, but we don’t move on,” says Heather. “We never expected to lose Doug as early as we did. I can only hope that our efforts are making him proud and saving lives in the process.”
Cancer League of Colorado has generously pledged $150,000 to inspire others to support innovation in cancer research at the CU Cancer Center. CLC will match $2-to-$1 every gift made to the Investigator-Initiated Trial Program from now through September 30th, tripling donors’ impact and accelerating cancer research and developing new treatments.
TheUniversity of Colorado Cancer Centeris thrilled to announce thatDinner in Whitewill return to Denver on August 10, 2019! The event, which is held at a secret location, raises awareness of the life-saving research, clinical trials, and cutting-edge treatments at the CU Cancer Center.
In the years since Richard Nixon signed the National Cancer Act in 1971, the overall five-year survival rate for patients diagnosed with the disease has risen from about 50 percent to almost 70 percent. Adding the influence of improved cancer prevention (especially the more than 50 percent reduction in smoking since 1964), combined with better screening and better therapies, makes an overall decrease in the cancer death rate of 27 percent just since 1995. Here, for May’s Cancer Research Month, we speak with University of Colorado Cancer Center Founding Director, Paul Bunn, MD, and current CU Cancer Center Director, Richard Schulick, MD, MBA about the innovations that have driven these improvements and the challenges that remain for the future of cancer research and treatment.