Uniting for Hope One Fearless Step at a Time

Race for Hope Raises $2 Million for Brain Cancer Research and Honors Vice President Joe Biden

This past Sunday, 10,000 individuals from across the globe gathered for one purpose—to make a big bet to find and fund a cure for brain cancer. Together they raised $2 million to benefit Accelerate Brain Cancer Cure (ABC2) and the National Brain Tumor Society (NBTS) at the historic Race for Hope – DC. For nearly 20 years, Race for Hope has rallied individuals and organizations together to fearlessly raise more than $27 million for brain tumor research and honor those affected by the disease.

The need to do so is more urgent than ever before, as there are almost 700,000 people living with a primary brain tumor diagnosis in the U.S., and within the next year, more than 210,000 people in the United States will be diagnosed with a primary or metastatic brain tumor.

This year, Vice President Joe Biden was in attendance with his family at the event where they received the Triumph of Spirit Award in memory of his son Beau Biden, who passed away from brain cancer in 2015. The award honors their dedication and commitment to advocating for the National Cancer Moonshot initiative to end cancer as we know it. He shared with attendees that the brain cancer research field is changing exponentially and the U.S. is investing billions of dollars in cancer research to find a cure. He encouraged all attendees to, “Keep running [and] keep the faith. There is hope. It’s not a false hope.”

Race For Hope 2016 Biden
Vice President Jo Biden and Nitin Ramachandran (young brain cancer survivor).

At the beginning of the race, a Survivor Tribute featuring more than 350 fearless brain tumor survivors—such as 13 year old brain cancer champion Nitin Ramachandran, photographed here with Vice President Biden—who marched together towards the starting line as a symbol of hope and strength in their battle against brain tumors. Among the participants was: Deanna Glass-Macenka, a neurosurgical oncology nurse who is in her ninth year of running the Race for Hope and is the team captain for The Johns Hopkins Hospital’s team; Julie Frank who was diagnosed with brain cancer in March of 2008 while in graduate school at George Washington University; and Beth Ann Telford, Ironwoman and brain cancer champion has raised nearly $1,000,000 for ABC2. Next up for Telford is the 2017 World Marathon Challenge, in which she will run seven marathons on seven continents in seven days to benefit ABC2. Attendees also paid tribute to those we have lost to brain cancer, including Dana Daczkowski who was the younger sister ofABC2’s own Nike Beddow, both co-founders of the Race for Hope, and Pamela Sue, the daughter of Race For Hope co-founders Lionel and Sandy Chaiken.

David Cook, previous American Idol® winner and Honorary Chair of the Race for Hope – DC, brought his Team for A Cure back this year and raised more than $92,000. David and his team participate in memory of his brother Adam who passed away due to brain cancer. As an ABC2 Ambassador, David is champion for the cause throughout the year.

Race For Hope 2016 Case Foundation Team
In Honor of Dan Case, the Case Foundation, Revolution and PathNorth join together at the 19th annual Race for Hope, including (pictured here): Cassaundra Maximin, Seth Kwiecien, Doug Holladay, Shelby Murrin, Sheila Herrling and family, Melanie Horsford, Kim Vu, Bob Woody, Beth Sims, Julia Power, Julie Cohen, Jessica Zetzman, Brian Sasscer, Aman Fiseha and Chris Hughes.

This year the Case Foundation team gathered to walk in honor of Dan Case, brother of Steve Case. In 2001, Dan was diagnosed with brain cancer. Discouraged by a lack of information and limited treatment options, Dan, his wife, Stacey, and Steve and Jean Case, co-founded ABC2. The organization (which is a grantee of the Case Foundation) is driving cutting-edge research and treatments for brain tumors and has awarded more than 100 grants totaling $20 million in brain tumor research.

To learn more aboutABC2 and how you can help in the search for a cure for brain cancer, visit abc2.org.

Header photo (from left to right): Max Wallace, ABC2; Roberta Liss, Cushman & Wakefield; Jeff Kolodin, NBTS; Johnathan Weinberg, ABC2 ; David Arons, NBTS.

Rim-to-Rim to Beat Brain Cancer

This week, Ironwoman BethAnn Telford of TeamBT and endurance cyclist Maria Parker of 3000MilesToACure will cross the North Rim of the Grand Canyon together with a shared mission: to beat brain cancer. In one grueling day, they will race Rim-to-Rim: from the North Rim down to the canyon floor, across the canyon, then up to the South Rim over 21.1 miles with more than 10,000 feet of elevation change.

Telford is an Ironman World Champion triathlete, a serial marathoner and a 10-year brain cancer survivor who has raised hundreds of thousands of dollars for research and development of cures for the disease. As Telford wrote recently in her blog, the Rim-to-Rim journey is “a powerful metaphor for the race to end brain cancer. The canyon represents the valley of death of underfunded research.” Her Rim partner Parker is an accomplished ultra-marathon cyclist and was the winner of the 2013 Ride Across America, dedicating her victory in honor of her sister’s battle with brain cancer. She and her family founded 3000 Miles to a Cure—a charity dedicated to raising $1 million for brain cancer research.

Part of their journey includes the filming of “Crossing the Canyon”—a short documentary film about their passage and the organization. The film will extend their impact beyond the walls of the canyon, inspiring and giving hope to those battling brain cancer.

Proceeds raised from their journey will benefit Accelerate Brain Cancer Cure (ABC2), a Case Foundation grantee and nonprofit organization that drives cutting-edge research and treatments for brain tumors. ABC2 was co-founded by Jean and Steve Case, and Stacey Case after Steve Case’s brother (and Stacey Case’s husband), Dan Case, succumbed to the disease after a fight with brain cancer.

Since its inception, ABC2 has awarded more than $20 million in brain tumor research funding to highly qualified investigators and physician-scientists from more than 40 research institutions. Brain cancer is the leading cause of tumor cancer deaths among children and young adults. There are more than 600,000 people in the U.S. today with a brain tumor diagnosis, and another 66,000 new diagnoses are expected this year. It is a uniquely challenging disease that is in need of strategic, focused research funding.

Together, Telford and Parker will cross the North Rim of the Grand Canyon, into the valley, and climb the other side as they bridge effective treatments for brain cancer. These two fearless agents of change are women whose impact will extend beyond the walls of the canyon, inspiring and giving hope to those battling brain cancer. Good luck to them both!  Follow their journey on Twitter at #CrossingtheCanyon.

Racing for a Cure

Recently I watched a 60 Minutes segment on brain cancer patients at Duke University. These men and women had been diagnosed with a type of brain cancer called glioblastoma. The episode went on to tell the story of the clinical trial that used a re-engineered poliovirus to kill cancer cells. That’s right, polio – a disease that once paralyzed more than 1,000 children worldwide each day. I heard about the trial because of Accelerate Brain Cancer Cure (ABC2), an early funder of the polio vaccine research at Duke.  And while it might sound like science fiction, the patients and doctors at Duke have shared hope for the hundreds of thousands of individuals diagnosed with brain cancer each year.

This May, thousands of walkers, runners, volunteers, activists and brain cancer survivors will gather in Washington, D.C. for the world’s largest brain tumor community event – the 18th annual Race for Hope – to support ABC2 and the National Brain Tumor Society (NBTS). I’ve been a supporter of this organization for the past two years for a number of reasons. First and foremost, I have known several individuals who have passed away from brain tumors. Just over two years ago, my dear friend, Shira Levy, broke some disheartening news to me. Her mother Debbie, who had just returned from Eastern Europe on yet another worldly family vacation, was having issues with her balance and her speech. I thought, “this can’t be.” Her mom was a healthy yogi, a businesswoman, and a world traveler, and I thought it couldn’t possibly be true that the woman whose dining room table I had sat around during Thanksgiving was this sick.

Debbie was diagnosed with cancer in the first week of July in 2012. By August, she was unable to walk, and in October she passed away – just 95 days after her initial diagnosis. Her story and her fight was chronicled by Shira’s then fiancée, Dakota, in a photo tribute.

That next year I told Shira about a 5K in D.C. called the “Race for Hope” that was led by ABC2, in conjunction with the Case Foundation and many others. ABC2 was created by Steve Case’s brother Dan, Dan’s wife Stacey, Steve, and Jean Case in 2001 shortly after Dan was diagnosed with brain cancer. It was founded as a nonprofit organization that uses entrepreneurial approaches to bring innovative new treatments to brain cancer patients.

After learning much about the organization during my first year at the Case Foundation I told Shira confidently “You need to sign up for this race in honor of your mom.” She did so, that same week, and “Team Debbie” went on to raise $17,000 to support brain cancer research that first year. I was so proud of Shira and the efforts of her family and friends who had not only honored her mother, but also raised awareness about brain cancer, and thousands of dollars to support the advancements in critical scientific research through research grants and partnerships.

Through strategic partnerships with medical research centers, early-stage biotechnology companies and large multi-national pharmaceutical companies, ABC2 has awarded more than $22 million in brain tumor research funding to qualified physicians and scientists from 42 institutions and companies such as Johns Hopkins in Baltimore, Mass General in Boston, Henry Ford Hospital in Detroit and Dana-Farber in Boston.

The Race for Hope has been a big part of their ability to support these doctors and their trials. Since its inception in 1998, the race has united more than 100,000 attendees and raised more than $20 million for brain tumor research and advocacy. This year’s race includes nearly 600 fundraising teams, and is slated to raise nearly $2.5 million for research. Once again I will join “Team Debbie” in honor of Shira’s mother.

The need to increase research funding for brain cancer is urgent. Nearly 700,000 Americans are living with a primary brain tumor diagnosis. Within the next year, more than 210,000 more will be diagnosed with a primary or metastatic brain tumor. We can find a cure and support organizations like NBTS and ABC2 and their tremendous efforts to raise funds to give families, like Shira’s, hope.

Learn more about the efforts and the race at www.curebraintumors.org

Into Fearless, Uncharted Territory: The Brain Cancer Expedition

This post was written by Max Wallace on behalf of the Case Foundation: 

We often say that Accelerate Brain Cancer Cure’s role is like that of Lewis and Clark — we go out into the wilderness, create new trails, and send back maps for others to follow. In our case, the wilderness is brain cancer. This year, our small expeditionary and experimental team will build the first model system that will enable a large number of patients to have their brain tumor fully profiled and then use that information to help them get the most state-of-the-art treatment for their exact tumors. We’re calling it the “Precision Medicine” project and we believe it’s a disruptive innovation that can revolutionize the field.

Today, 41 people in the U.S. will die from the most common form of brain cancer called glioblastoma multiforme (GBM). This happened yesterday and, unless something changes, it will happen again tomorrow. Sadly, we are still using the same basic treatment tools and techniques that we have used for decades and, in spite of our best efforts over that time, the average life expectancy for a GBM patient is still about a year.

However, brain cancer research is about to change dramatically thanks to advances in technology, and it’s our moment to let urgency conquer fear. Genetic information and robotic and nano processes are intermingling and leading us into a new era of genomically-informed “precision” medicine. Our understanding of the genomic basis of cancer is increasing at an exponential rate. We now know that not all cancers are the same, even those which arise in the same organ. More and more people are being treated with new therapies targeted at changes specific to their individual tumor.

We are also beginning to understand that one type of cancer may use the same types of biochemical pathways as another type of cancer. This raises the possibility that a drug that works for one (e.g., melanoma) can be selected and quickly adapted for use against another with a similar molecular profile (e.g., GBM).

Not long ago, it cost tens of thousands of dollars to have a tumor profiled and you could only do it in a handful of academic laboratories. These technologies are being standardized and the cost of doing a tumor profile has now dropped to around $5,000 (and will continue to fall). Even at current levels, we can begin to integrate tumor profiling into regular brain cancer care.

Our “Precision Medicine” project will bring together researchers, clinicians and, most importantly, patients to take advantage of these new opportunities and help develop the most state-of-the- art personalized treatments. If the system works, we believe that we can transform research approaches and clinical practice. If we can do that, 12 months of survival might become two years, and two years might become four, and so on and so on. At that point, brain cancer will no longer seem like such an impenetrable wilderness.

Max Wallace is the CEO of Accelerate Brain Cancer Cure, an initiative co-founded by Jean and Steve Case.

Fearless Focus: Max Wallace

In our journey to Be Fearless and champion a fearless approach to tackling social challenges, the Case Foundation team will spotlight leading changemakers across sectors that have embraced fearlessness. Our spotlights will provide personal accounts of why these changemakers adopted a fearless approach, how they overcame hurdles, and how taking risks, being bold, and failing forward led to quicker results and deeper impact. We spoke with Max Wallace, CEO of Accelerate Brain Cancer Cure (ABC2), a nonprofit organization that uses entrepreneurial approaches to bring innovative new treatments to brain cancer patients. ABC2 was created in 2001, shortly after co-founder and Chairman of the Board Steve Case’s brother Dan Case was diagnosed with brain cancer. Dan, his wife Stacey, and Steve and Jean Case established ABC2’s singular focus to find a cure for brain cancer. ABC2 supports translational research in targeted therapies, drug delivery, cancer stem cells and using biomarkers for early detection and prognosis. The organization operates in honor of and in celebration of Dan, who passed in 2002. Max says “ABC2 is, in essence, a special operations team in the war against brain cancer.” Previous to joining ABC2, Max was an entrepreneur building research-driven biopharmaceutical companies.

You can watch Max’s answers to our questions in the video above, or share each segment individually:

What do you think it means to Be Fearless in approaching social challenges?
Of course I’d like to think we are fearless in our fight against brain cancer. Every day we fight an implacable, complex, dangerous disease for people whose lives are at stake. If fear is “a distressing emotion aroused by impending danger, evil or pain,” it is a daily part of our world. John Wayne described it:  “Courage is being scared to death … and saddling up anyway.” We saddle up every day and take as big and audacious a swing at brain cancer as we can. It may not be truly fearless – but it’s pretty darn close.

Tell us about a time when you and your organization were Fearless.
We worked witih Genentech to tackle risks and, in an unprecedented step, ABC2 provided funding for Genentech to do the required brain cancer studies. The result: in May 2009 the FDA granted accelerated approval for Avastin to be used to treat brain cancer – the first new brain cancer drug approved in over a decade. This pioneering project has set the tone for all that ABC2 has done since.

What did you learn & what advice would you give other organizations facing a similar decision point?
Steve Jobs said that he was trying to “make a dent in the universe” and we agree with that approach. Trying to dent the universe is risky business and we often operate in unmapped territory (in fact, our job is to send back maps). We know there will be failures, but that is not a reason to hold back. And, if we do fail we want our failure to be both fast and forward.

What inspired your organization to Be Fearless?
In 2001, Dan Case was 43 and on top of the world. Then Dan was diagnosed with brain cancer. Counseled by many to focus just on his own life, Dan chose to take a different path and ABC2 was born. While Dan did not survive his cancer, every day we work to be as caring and courageous as he was.

Learn more about Max Wallace here. Read more about Be Fearless campaign. Know someone that we should spotlight for Fearless Focus? Let us know here in the comments or tell us on twitter @casefoundation using #befearless.

Autumn updates from Jean Case

As the summer winds down and we gear up for what promises to be an exciting fall at the Case Foundation, I thought it might be useful to step back a bit and reflect on our work – both the wonderful opportunities that we encounter every day as we invest in people and ideas that can change the world, and in the challenges and barriers we face as we work with our extensive network of partners and organizations to do great things.

Together with many of our colleagues in the philanthropy and nonprofit community, the macro shifts that have taken place around us in the past year have caused us to look hard at what we fund and to be vigilant in assuring that our resources are deployed in smart, effective programs that are yielding meaningful outcomes. And, despite the worst economic downturn in recent history and major transitions taking place in the public sector, we are pleased about the progress of the initiatives we’ve supported and enthusiastic about the new opportunities ahead.

One example for instance, we launched a civic engagement campaign in January to coincide with the inauguration of President Obama. The campaign, entitled “Change Begins with Me,” called on citizens to make commitments to “be the change” through small or very significant personal acts – anything from shoveling snow for a neighbor to tackling bigger issues at the community or even global level. Last week, we announced that a sampling of participants suggests more than 90% of those that made commitments said they’ve already fulfilled them. The number exceeds where we thought we would be with the campaign at mid-year, so we feel very good about those efforts.

But at the same time, on a larger spectrum, the Civic Health Index, released just last month by the National Conference on Citizenship, reports that volunteerism and acts of civic engagement are down in the nation overall, with the economy cited as the #1 dynamic influencing citizen efforts on these fronts. We’ve put significant Case Foundation efforts and resources toward civic engagement and volunteerism in recent years, and so the report reminds us that we still have a long way to go to achieve the kind of active civic engagement our nation and communities need and deserve.

Our main area of investment in health care has been in the brain cancer arena, through Accelerate Brain Cancer Cure (ABC2), an organization that was launched with an innovative approach toward accelerating therapies for brain cancer patients. The organization was created to be a collaborative that brings together scientists, doctors, pharmaceutical companies, universities and other nonprofits. When we launched in 2002, we knew it would be a longer versus shorter haul toward desired outcomes. For many years and through many millions of dollars of investment, we have worked with the scientific and medical communities toward the goal of new therapies for patients. We had a sense of slow momentum as we aimed our focus at the screening of compounds and increasing the number of clinical trials and scientific convenings that we hoped would advance the field and result in new therapies being approved for patients. Admittedly, as the years ticked by, there were periods when we questioned if our investments were paying off or producing outcomes at a fast enough pace. Then 2009 arrived, and it has proven to be a remarkable year. For the first time in over a decade, the FDA approved a new drug, Avastin, for recurrent brain tumor patients. ABC2 helped to fund the early screening of this drug in partnership with Genentech, Duke University and others that ultimately cleared the way for clinical trials and approvals.

In addition, in the late spring, American Idol’s David Cook served as honorary chair of the Race for Hope, the primary fundraising event for ABC2, in partnership with the National Brain Tumor Society. This year the event raised more than $2 million. Shortly after the race, David appeared on American Idol’s finale and donated his iTunes revenues from the recording to ABC2. Needless to say, the momentum and progress is very real for our investments in brain cancer and we look forward to even more developments in the months ahead.

Our support of health and humanitarian efforts in Africa has resulted in a portfolio of diverse efforts that span much of the continent. Investments in HIV/AIDS, malaria, clean water and efforts aimed at reducing extreme poverty, have opened our eyes and taught us much about challenges and opportunities of working in Africa. And they’ve taught us that each country, and indeed each village, in Africa brings its own unique characteristics, making a “one size fits all” solution to entrenched problems unrealistic and posing significant barriers to scale.

One example is PlayPumps, the initiative launched to bring clean water to African villages via children’s merry-go-round pumps. We’re proud of the investment we’ve made in PlayPumps International U.S., the fundraising and marketing arm for the initiative, and the strides they’ve made in helping to bring clean water to millions of people. However, after three years of working on the ground in Africa, PlayPumps has identified significant concerns related to maintenance of the pumps in certain areas. While the initiative has brought hundreds of new pumps to Africa – an outcome we celebrate – at the same time some mix of the scale and reach, combined with a downturn in the economy, has meant that local contractors can’t keep pace with the maintenance needs. It is becoming clear that the kind of scale we hoped for will not likely be achievable in the timeframes initially outlined. As a result, Gary Edson, a strong leader with both development and business expertise, was brought on board as CEO of PlayPumps International to help the organization take a hard look at the right ways to go forward with humanitarian efforts in the future and how to best take and apply lessons learned from our involvement to date.

As I write this, we are poised to launch our next America’s Giving Challenge (AGC) in the coming weeks. We are deeply in the throes of the advance work, helping nonprofits gear up and get trained to take full advantage of what we hope will be many thousands of individuals coming online to support causes they care about – and to pick up new skills to engage new donors and supporters in the future. When we introduced the first America’s Giving Challenge in late 2007, our desired outcomes were not just about getting individuals to give to causes they cared about through this new technology, but also to galvanize nonprofit organizations to get up to speed and develop expertise in this exciting, new marketing and outreach front.

That Challenge motivated more than 70,000 Americans to give to causes they cared about and helped prepare many thousands in the nonprofit sector for social network marketing and outreach. But we realize that as we take this year’s Challenge forward, we do so in an economy in which resources are constrained – both for individuals and for organizations. What will this mean to the outcomes for this year’s campaign? Will fewer people give? Will nonprofits have the resources to fully leverage this opportunity for their organizations? These are questions we’ve asked ourselves time and time again, and at times we’ve worried that this year’s Challenge may not raise as much money or recruit as many donors as the first. But the bottom line is that we know there is a greater need in our communities, our nation and around the globe than ever before. We’re willing – and excited – to go forward with this investment with the faith that people will support the organizations that support them and that nonprofits will be ready to take advantage of the moment.

We say that the Case Foundation “invests in people and ideas that can change the world.” If we had a crystal ball, we’d invest in people and ideas that WILL change the world but the bottom line is sometimes we can’t know for sure until we try. We’re committed to learning from our successes and challenges and to work collaboratively with others to share and learn along the way.

Yours in service,

Jean Case

Charity athletic events: They hurt so good

This post was written by Nicola Beddow on behalf of the Case Foundation:

When it comes to raising funds and awareness for a good cause, some of the most popular events are ones that involve a little blood, sweat and tears. Marathons, distance biking, and run/walks top the list of charity athletic events. As co-founder and director of the Race for Hope 5k Run/Walk, I frequently get calls and requests for advice on organizing run/walks. I’m always happy to share experiences, resources and new fundraising ideas.

People are attracted to athletic fundraising events for many reasons – supporting a cause, getting in shape, accomplishing a goal and maybe even for the rewards that come from pain and suffering. In fact, Princeton University researchers Christopher Olivola and Eldar Shafir conducted a study at The Oppenheimer Lab that suggests people like to participate in fundraising activities that involve discomfort. Mr. Olivola attributed the results of the study to a phenomenon he dubbed the “martyrdom effect.” “When you have to work hard and suffer for a cause, then you become more involved and more motivated to help that cause,” he said. That could explain the appeal of charity triathlons, marathons and the latest craze: running up the stairwells of skyscrapers.

Fortunately, there are plenty of events for people at all fitness levels. The Race for Hope – DC, presented by Cassidy & Pinkard Colliers – a run/walk to benefit Accelerate Brain Cancer Cure and the National Brain Tumor Society draws over 8,000 participants, including many families. It’s inclusive – just about anyone can run or walk a 5k. The “martyrdom effect” can be seen at this level too. I often hear Race participants say “running or walking” is the least they can do in support of a loved one who has been diagnosed with a brain tumor.

Charity athletic events are growing in participation and dollars raised. According to the Run Walk Ride Fundraising Council, the top thirty “athon” programs generated more than $1.76 billion in gross revenue for charity last year, up from $1.64 billion in 2007 – a healthy 7.6% increase.

Here’s a look at the top five events from the Councils’ recent Run Walk Ride Thirty Study:

  • $430.0 million…(+5.9%)…Relay for Life…American Cancer Society
  • $125.5 million…(+0.4%…Team in Training…Leukemia & Lymphoma Society
  • $115.0 million…(-0.9%)…March for Babies…March of Dimes
  • $113.1 million…(+19.8%)…Race for the Cure…Susan G. Komen for the Cure
  • $110.0 million…(+26.5%)…Breast Cancer 3-Day…National Philanthropic Trust

Of course, program executives who responded to the study expressed concern about the economy this year. They hoped to use two strategies to drive growth: increased corporate team recruitment followed by providing individual participants with tools to raise more funds.

Key elements to a successful race include: a passion for the cause, a core group of talented and committed volunteers, and online fundraising and awareness building tools.

Volunteers with experience in media outreach, sponsorships and team building will be critical to your success. No one can tell a story, land a sponsorship or build a team better than someone who has been personally impacted by the cause.

Hire a running company to handle permitting, logistics and timing.

Make sure you have an online fundraising strategy. Some nonprofits use online fundraising software like Blackbaud/Kintera or Convio, while others build their own custom websites. Sites like Firstgiving.com or Active.com enable individuals to raise money for their special cause as they participate in an athletic event not directly connected to a charity. Social media tools are extending the reach of athletic event fundraising, as well. Nonprofits and individuals have set up Facebook Fan pages and Twitter accounts to help spread the word about their run or walk. See how we’ve used these tools for Race for Hope:

A new and welcome trend is the “greening” of athletic fundraising events. The running community is leading the way. While it takes extra effort and the costs are not cheap, there are considerable environmental benefits. Races are recruiting additional volunteers to help manage the recycling of thousands of plastic water bottles, containers and paper cups. They are featuring organic t-shirts, bio-degradable bib numbers and compost bins for banana and orange peels. Race directors are cutting back on printed race materials and encouraging participants to go online for information and registration.

It’s never been a better time to get fit, go green and support your favorite charity!

Here’s some great resources links:

Guest blogger Nicola (Nike) Beddow is the Director of Events at Accelerate Brain Cancer Cure (ABC2), a Case Foundation partner organization.