2019 Sammy's Superheroes Foundation Annual Report

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2019 ANNUAL REPORT sammyssuperheroes.org

LETTER FROM OUR BOARD PRESIDENT On July 30th, 2012, our four-year old son, Sammy was diagnosed with stage IV high-risk Neuroblastoma - a cancer of the sympathetic nervous system. At Sam’s diagnosis, his disease had spread to his bones, bone marrow and lymph nodes. At that time, High Risk Neuroblastoma was a devastating diagnosis with only a 40% long-term survival rate despite incredibly aggressive treatment. I knew it was bad when the doctors told us not to Google it. We were in shock and in an instant our lives were turned upside down. Our family and friends were also left reeling and feeling completely helpless.

ERIN NAHORNY 2019 Board President

Two days later, on August 1st, three of my closest girlfriends gathered to discuss what they could do to support Sammy and our family. These ladies came up with a superhero t-shirt design, started a campaign at our three local high schools’ football games…. And this turned into a community movement, raising over $40,000 in just a few short months.

In December of 2012, we learned that Sammy wasn’t responding to the treatment as hoped and I often tell people that this was worse than diagnosis. We began desperately researching clinical trials and specialists. Sam went from a 40% chance of surviving his disease to a 10% chance. During this time, we began discovering horrifying statistics about childhood cancer. Only 4% of the federal cancer research budget is allocated to childhood cancers and many treatment protocols our children are receiving are 30 and 40 years old. Only four new drugs have been developed and approved for children in the last 20 years. We learned that the incidence of childhood cancer was on the rise, increasing by nearly 25% over the last 40 years. It became clear what we needed to do with the money that had been raised. We decided to dedicate our efforts to raising funds for research that could make a significant impact on this disease. In early 2013, we officially gained our non-profit status, establishing our mission “to raise awareness & fund lifesaving research for ALL types of childhood cancer.” This wasn’t just about Sammy. This was about every child and every family who had to navigate the unthinkable. Years ago while attending a childhood cancer event, we heard an oncologist quote Ghandi with, “The true measure of any society can be found in how it treats its most vulnerable members, our children.” This quote spoke directly to what has become the heart of our mission, as we continue to strive for funding for our vulnerable children. In 2019, we were able to provide over $350,000 in funding for four research projects being conducted throughout the United States. It has been nearly eight years since Sam’s diagnosis and he has beaten all the odds. He is a happy, loving, silly, kind 12-year-old who likes to raise chickens in our backyard and tease his dad. He loves his mama fiercely.

For these reasons and so many more, we keep moving this foundation forward, and are extremely proud to have given our ONE MILLIONTH dollar to research in 2019. 1

CORPORATE PARTNERSHIPS & COMMUNITY EVENTS 2019 Board Members: Erin Nahorny, President Sam Larsen, Vice President Megan Valorz, Treasurer Megan Cimpl, Secretary Amy Williams, Secretary Nathan Karges Shannon Lofdahl Erica McMahon Luke Saenz Michell Sell 2020 Board Members: Erin Nahorny, President Sam Larsen, Vice President Megan Valorz, Treasurer Amy Williams, Secretary Mark Brown Krystal Dinslage Alyssa Hogeland Erik Klutman Shannon Lofdahl Luke Saenz Michell Sell 2019/2020 Part-Time Staff: Alyssa Hogeland, Interim Executive Director Megan Cimpl , Interim Office Manager Michelle Ainsworth, Office Assistant 2019 Junior Board: Alayna Wilson, President Abbi Wendt, Vice President Eastyn Klink, Vice President Morgan Kukils Amanda Malashock Andrew Beringer Audrey Wagoner Chloe Discoe Ellie Bock Grace Wickam Keke Bradley Kyleigh Gall

Thank you!

We would not have been able to reach this milestone of making $1,000,000 in grants for cancer reseach without YOU! Thank you to all of our individual and • Dancer’s Unite corporate donors who contributed to • Eat Drink Cure - LeadBelly Omaha Sammy’s Superheroes Foundation in • Holiday Angel Ornaments - Rustic Lux Designs 2019. Here are some of our highlights: • Jeep for a Cure - Genoa Medical Facilities • Kiewit Denim Days • Bo’s Goes Gold - Bo’s West • Labor Day 5k - Fonda, IA • Cars ‘n’ Heroes - Gene Steffy Ford • MakeSense Foundation • Columbus Big Give • Omaha Gives • Columbus Youth Philanthropy • Shootout for Cancer event Contest • Side-by-Side Raffle - Krohn Family • Creighton/Northwestern • Tri-City Storm Hockey Mutual event • Young Farmers and Ranchers event

Income $363,345 Direct Public Support $179,616 Events $137,447 Sidekicks Program $48,282 Expenses $100,580 Fundraising Events $59,436 Program Services $26,069 Management & $15,075 General Operations Research Grants


For year ending December 31, 2019. Not to be considered as part of audited financial statements.


2019 CHILDHOOD CANCER RESEARCH GRANTS NE WATERSHED PROJECT - UNMC & CHILDREN’S HOSPITAL MEDICAL CENTER - OMAHA, NE In 2019, we funded $115,000 to support a study currently being conducted at the University of Nebraska Medical Center, Department of Environmental, Agricultural and Occupational Health College of Public Health. This study focuses on the possible role of contaminants in Nebraska surface and ground waters in the etiology of adverse health conditions, particularly pediatric cancer and birth defects. They will analyze the nitrate data in various ways to relate the levels of pediatric cancers in the approximately 75 watersheds we are using in Nebraska. They are pursuing this investigative approach to try to understand “hotspots” for pediatric cancers and birth defects in Nebraska. Although this study will be an extensive study conducted over many years, Sammy’s Superheroes is proud to be a part of making a difference in Nebraska!

“Sammy’s Superheroes Foundation is supporting the work to attempt to identify why Sammy’s has to exist in the first place. This work will for the first time evaluate watersheds that have an increased incidence of cancer so we understand what compounds may exist in that water and begin to truly define if a problem exists and how we can address it. This work will lead to a better understanding of why we have an increased incidence of pediatric cancer in Nebraska, and will guide conversations of how to better serve our rural population.” -Dr. Don Coulter, UNMC


In December of 2019, we funded $100,000 to a Neuroblastoma project being conducted at Dana Farber Institute in Boston. Relapsed Neuroblastoma refers to the return of Neuroblastoma in patients who have already undergone treatment for the disease. Approximately half of children who are treated for highrisk Neuroblastoma and achieve an initial remission will relapse. In addition, in approximately 15 percent of children with high-risk Neuroblastoma, the tumor does not respond to initial treatment. These children are said to have refractory Neuroblastoma. This project

Jan. 2014 $50,000 University of Chicago

“We are so grateful for the generous support from Sammy’s Superheroes that is helping us to take advantage of new liquid biopsy techniques to learn about high-risk Neuroblastoma.” -Dr. Steven DuBoi

Dec. 2014 $50,000 Duke University Sep. 2014 $40,000 University of Nebraska Medical Center


is a treatment strategy for residual or refractory neuroblastoma disease, developing a vaccine (GVAX) for patients affected by the disease.

Jan. 2016 $50,000 University of Chicago Sep. 2015 $50,000 University of Chicago

Dec. 2016 $50,000 Dana Farber Cancer Institute

DIPG PROJECT AT LURIE CHILDREN’S HOSPITAL - CHICAGO, IL In 2019, we funded $45,490 to a DIPG Project being conducted at Lurie Children’s Hospital. DIPG (diffuse intrinsic pontine glioma) is a type of tumor that starts in the brain stem. It is one of the most aggressive and fatal brain tumors of childhood cancer with less than 10% survival one year after diagnosis. At present, there is no cure for this type of tumor. This research will study how Histone 3 (H3) that controls healthy gene expression is mutated in the majority of high grade gliomas and may be responsible for tumor development using a bromodomain inhibitor that targets the effects of H3 mutation. This is the first treatment strategy of its kind and we are thrilled to be a part of this project.

“With your support, our team of investigators are pursuing a variety of ambitious and important goals to improve the care and survival of children with brain tumors. We are using cutting edge analytic approaches developed at Northwestern, including top-down proteomic, histone tail mass spectrometry, and droplet digital DNA analysis, that have never before been used to analyze pediatric brain tumors, in order to learn more about tumor biology and response to therapy. “

June 2017 $30,000 Children’s Oncology Group Seattle May 2019 $5,000 University of Nebraska Medical Center

June 2019 $400,000 University of Chicago

“We are working with colleagues around the world to employ a novel liquid biopsy platform for less invasive tumor diagnosis and longitudinal monitoring of response to treatment. We are exploring novel surgical techniques, including microcatheter drug delivery and focused ultrasound technology, with the aim of increasing treatment efficacy, and are working to launch a Phase 1 clinical trial of bromodomain inhibition for pediatric glioma.

Our team’s findings have helped fuel the growth of our international reputation and collaborations, fostering important partnerships that will further accelerate discoveries. We look to a very bright future, which will become even more productive now that we have relocated our laboratories to the brand new, state-of-the-art Simpson Querrey Biomedical Research Center on the Northwestern University Feinberg School of Medicine campus. With your support, we look forward to future discoveries in this beautiful space, that will ultimately help make the future brighter for children with brain tumors.”

-Dr. Amanda Saratsis; Drs. Ann & Robert Lurie, Children’s Hospital of Chicago

$1,000,000+ in grants Dec. 2019 $100,000 Dana Farber Cancer Institute

Dec. 2019 $45,490 Lurie Children’s Hospital

Dec. 2019 $110,000 University of Nebraska Medical Center 4


PEDIATRIC CANCER DATA COMMONS (PCDC) - UNIVERSITY OF CHICAGO In June of 2019, we completed our $400,000 pledge to the University of Chicago’s Pediatric Cancer Data Commons Project a year early! Almost 90 percent of kids with the most common types of cancer survive. Yet progress has been limited for many other types of pediatric cancer, such as Neuroblastoma, brain tumors, and metastatic sarcoma. Even with modern, intensive treatment approaches, cure rates for highrisk Neuroblastoma are less than 50 percent. Much work remains to understand how these tumors resist treatment, and ensure that children with any cancer type experience durable cures. Comer Children’s Hospital physician-scientist Susan Cohn, MD, is leveraging University of Chicago strengths in big data and basic science research to improve these outcomes. In 2004, she helped form the International Neuroblastoma Risk Group (INRG): a globe-spanning collaborative effort to collect and share data from Neuroblastoma research. Today, the INRG database contains information from more than 18,500 patients. Science rests on the search for patterns. If Newton had only the one apple to go on—instead of a lifetime of watching objects fall—he could never have characterized gravity. For rare conditions like Neuroblastoma, researchers have worked from mere handfuls of data points, either because the information wasn’t available or it was available in a form (such as published in journal articles) that couldn’t feasibly be collected and examined together. Dr. Cohn intends to change that with the Pediatric


Cancer Data Commons (PCDC). Leveraging the platform built by Robert Grossman, PhD, at the University of Chicago for the Genomic Data Commons—a $38 million National Cancer Institute project to collect, standardize, store, and analyze genomic and clinical information from thousands of cancer patients—the PCDC will link clinical pediatric cancer databases (like the INRG’s) with genomic data and will provide the analytic tools that will help researchers find patterns associating patient genetics and tumor genomics with treatment response and outcome. For example, the PCDC could reveal correlations between certain tumor genetics and patient outcomes, which would lead to better diagnostics: doctors could know, with a biopsy, that patients with specific genetic features would do best with lower doses of chemotherapy.

“The support from Sammy’s Superheroes has provided the resources needed to continue to build and expand the Pediatric Cancer Data Commons. This ecosystem links clinical information with genomic data and is available to researchers from around the world. Seminal studies have already been performed with large patient cohorts, never before possible, which have led to new knowledge about the biology of pediatric cancers, the identification of novel prognostic factors, and the development of new treatment approaches that will hopefully improve the outcome for children with cancer.” -Dr. Susan Cohn, University of Chicago

SAMMY’S SIGNATURE EVENTS Throughout the year, Sammy’s Superheroes Foundation hosts many signature events. To learn more about these events and how to get involved, visit sammyssuperheroes.org/events.

Glow Gold Honors, Columbus

A day of fun activities for the whole family and special honors for families currently fighting childhood cancer and/or honoring and remembering their angels with a special ceremony, children’s choir performance, balloon release and honor walk

Glow Gold Omaha

A family-fun event hosted at Village Pointe Toyota that includes games, food, fun, a one-mile-honor walk for anyone ever affected by childhood cancer, and a children’s choir performance and balloon release to honor all of the childhood cancer angels

Local Sporting Events

Sammy’s Superheroes got its start during a high school football game, so we are always glad when Columbus, NE and other communities show their support for Childhood Cancer Research by buying and wearing SSF t-shirts at local sporting events!

Get Involved If you’d like to host an event or volunteer with Sammy’s Superheroes, please contact our office at 402-563-4673 or admin@ sammyssuperheroes.org. To view an updated list of volunteer opportunities and ways to get involved, please check our website at sammyssuperheroes.org and check out the “Get Involved” tab.



Kenzie the Cancer Kicker

In 2014, three-year-old Kenzie McCoy was diagnosed with Stage 4 Neuroblastoma. Over the next 11 months, she received treatment at Children’s Hospital and Medical Center in Omaha. Only a short few months after completing all of the planned treatments, Kenzie relapsed. Over the next 2 years, the McCoy family traveled from Nebraska to Chicago and Seattle, desperately looking for promising trials that might save their daughter. The cancer became too aggressive, and the years of harsh treatments took a toll on her body. In November of 2017, Kenzie earned her angel wings at six-years-old. Today, the McCoy family has partnered with the Lincoln Stars and has raised over $5,000 for childhood cancer research.

Ava’s Army

The Sammy’s Superheroes Sidekicks, Ava’s Army, held their first Sugarplum Ball event in December of 2019. This event featured a Christmas tree auction, a live auction, ballet performances by Nebraska Ballet Theatre & School, dancing, & even a visit from Santa! The tree donated by Blossoms Floral & Sammy’s Superheroes, which highlighted many area fighters, survivors, & angels, was purchased by a donor for display at Children’s Hospital & Medical Center in Omaha. With the addition of this event, Ava’s Army raised nearly $40,000 in 2019 to be donated towards leukemia research in honor of their sweet survivor, Ava! Ava’s parents, Amanda & Brady, as well as their team of supporters, inspire many in their commitment to fund lifesaving research for children battling leukemia. We are thankful to walk alongside them on the journey to a cure. Make a donation in honor of Kenzie and/or Ava and learn more at SammysSuperheroes.org/Sidekicks. The Sammy’s Superheroes Sidekicks program was launched in 2017 to help cancer families and supporters collaboratively fund research needed to find a cure for childhood cancer. Each Sidekick can identify a project or type of cancer to direct funds toward.

In 2019, our Sidekicks raised over $48,000 for childhood cancer research! Learn more at SammysSuperheroes.org/Sidekicks