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The 2018 Report

In our 9th year, we continue
working to make sure every
kid battling neuroblastoma
(and other childhood cancers)
gets a promise of “don’t worry,
we know how to beat this.”

Kids like Trinity, who’s fighting
in Tampa, FL.

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84 and 97

Those are the 2 year event-free and overall survival percentages reported in the most recent paper our research partners published. A drug called DFMO, which we hope is stopping kids from relapsing, continues to show encouraging results. And even more encouraging? That same paper shows 4 year survival rates only a percentage point off: 83% and 96%. These numbers were close to 50% when we began in 2010.

This is what you are helping to accomplish. Rea, in the picture above, is one of the kids you’re helping. This year, she’s celebrating 4 years cancer free. Her family are a part of the Beat Nb family - telling her story and fundraising.

Our approach to beating neuroblastoma - and other solid-mass childhood cancers - is different. We’re proud of our partnership with Beat Childhood Cancer, the research consortium we helped to found and solely fund. Now including 47 children’s hospitals and research institutions, this group is the second largest childhood cancer consortium. As the numbers in the first paragraph show, together we’re driving tangible change in survival rates.

Over the next couple years, we are working toward getting DFMO approved by the FDA. That means ANY kid diagnosed with neuroblastoma can walk into a children’s hospital and get this treatment, fully covered by their insurance. It’s a major step forward in beating neuroblastoma.

We have seen so many new families join us through our Because of _____ program, sharing their children’s stories and fundraising all across the country. Thank you again for your help. It matters.

Kyle Matthews
Executive Director, Beat Nb

A HOME FOR HARLOW

Harlow  was diagnosed with stage 4 neuroblastoma cancer in Evansville, WI in September 2017.

Her dad, Andy runs a contracting company and had an idea to build (and sell) a house made from donated materials and labor, with all proceeds funding hope-and-life-giving clinical trials into beating neuroblastoma.

 

Joining our Because of _____ program to expand Beat Nb in the Wisconsin area, the Phillips family have raised nearly $100,000 toward the research Beat Nb drives. They've held multiple events, and are hoping to have the home sold by March of 2019.

Harlow is in treatment and doing well, hoping in 2019 to enter one of the clinical trials her family is helping to fund.

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The Beat Nb Board of Directors (2019 - 2020)

Our board is an incredible group of talented people with a passion for seeing neuroblastoma and other solid-mass childhood cancers cured.

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Eric Caisse

Chief Investment Officer,
Csenge Advisory Group

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Kyla Callahan

Co-founder, Executive
Director, Ryan Callahan
Foundation

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Patrick Lacey

Founder, Beat Nb

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Tom Secaur

COO, Citisoft, Inc.

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Brian Shactman

Anchor for NBC10
Boston and NECN

 

We are grateful to our outgoing board members for their dedication.

Kevin Dyer
Owner, AP Insurance Group

Xuan "Sing" Hurt
Proprietor, Anise Global Gastrobar

Bryan Jamele
Executive VP, Massachusetts Competitive Partnership (MACP)

Rick Lockhart
Director of Environmental Services and Property Management, Mass. Dept. of Public Health

Robyn Matthews
Co-founder, Because of Ezra

Ryan McGee
Attorney, Shankman Leone, PA

Amy McHugh
Director of Media Relations, Blue Cross Blue Shield of Massachusetts


Our Staff

The team behind Beat Nb's daily operations.

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Kyle Matthews

Executive Director

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Yvette Pullara

Operations Assistant

 

2018 Community Highlights

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Waylon Klitzman of Evansville, WI raised and sold his pig with all proceeds going to Beat Nb. The winners donated it back to the auction THREE times. Over four sales, more than $10,000 was the total take! Read more.
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In their second year, USF students Savannah Billett, Hunter Schoch, and Garret Greca rocked Fishing for the Fight, raising over $20,000! They’re already hard at work on the 3rd annual event.
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A Round for Rylee happened in Wisconsin as well, organized by Rylee’s family, who lost her to neuroblastoma this year. Their supportive community raised over $50,000 for their inaugural golf scramble.
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Always a hit, the 10th annual Touch a Truck event in San Diego happened on a 90º+ day this June. Nearly 60 vehicles were on display. Hosts the Mikulaks lost their son Max 10 years ago to nb.
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Ezi Azubuike, from Los Angeles, organized the inagural Karaoke 5k, raising over $10,000. Our friends from Rockaraoke joined to make this a fun race day! Ezi and her husband Chimdi lost their son Nnamdi to neuroblastoma in 2016.
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12 year old Zachary Robinson in San Diego organized his inagural Hoops for Lives 3 on 3 basketball tournament, raising over $10,000! He was helped by sister Ellery, and friends Julia Maurer, Spencer Reckles, and Reese Reckles.

We released “Beating Cancer,”
featuring Cambri from Michigan,
and music from Bikini Kill.

Directed by AJ Hurley,
you can watch the short
at beatnb.org/cambri

We released “Beating Cancer,”
featuring Cambri from Michigan,
and music from Bikini Kill.

Directed by AJ Hurley, you can
watch the short at beatnb.org/cambri

An Update from the Lab and Clinic...

Our progress is not just in the lab where we are publishing papers - nor simply in the clinic where we are offering clinical trial options to children - but most importantly with demonstrated and published results that have dramatically increased survival for children with cancer

Currently we have children coming to the Haworth Innovative Therapeutics Clinic from 10 different countries outside of North America including Spain, Portugal, Italy, Lebanon, Israel, England, Ireland, Sweden, Argentina and Turkey. We are collaborating with physicians from each of these centers to bring the newest therapeutic options and treatments to these patients across the globe. Closer to home - as a result of treating patients here from Canada, we have created a partnership that now has seven hospitals from Canada joining our consortium to offer the same trials we have here to children all across Canada.

Recently, we visited with our clinical location in Lebanon as they look to expand their offerings and to mirror the Haworth Clinic for their patients. In addition to these international locations, the Beat Childhood Cancer consortium now has 40 sites across America. The reality is that the physical, emotional and financial cost of childhood cancer treatment is enormous. Fortunately, this consortium is making a huge difference in the lives of kids with cancer not only with effective therapies but so that the families who cannot easily for their care can have access to all of the groundbreaking trials we have available here in Grand Rapids closer to their own homes. This allows families access to care that is not influenced by their ability to travel.

In order to help more children, we have grown this consortium by 56% in the past year - allowing us to enroll more patients than ever. In fact, we have now treated more than 900 kids with our clinical trials. Our groundbreaking precision medicine study using genomics enrolled 150 children, and over 70% of those kids had a clinical benefit from the therapies that were chosen based on a genomic understanding of their tumors.

More importantly, this broader understanding of what drives these tumors of childhood has opened so many new doors to treatment. As a result, we changed the name of our consortium from the “NMTRC” to “Beat Childhood Cancer” to better reflect our mission. We are genomically looking at cancer in previously unimaginable ways. The Haworth clinic is now leading the way in pediatrics where the ‘name’ or location of your cancer is irrelevant. We are now looking at what drives each child's cancer - in a way that is tumor agnostic - and is allowing our clinic to offer more therapies to all children with incurable cancer. Our work with genomics is allowing us to push more therapeutic options into the clinic and we are building programs for other tumor types such as ETMR and DIPG and working to establish an adult brain tumor research program with Dr. Vitaz and London. Since the start of cancer treatment and interventions it has always been the work in adults that trickles down to pediatrics. Today, pediatric research is leading the way forward towards clinical outcomes that will save the lives of anyone with cancer.

Dr Giselle Sholler

The 2018 Beat Childhood Cancer consortium footprint.

Numbering 40 children’s hospitals and research institutions in 28 states in the US, and 8 international locations (6 in Canada), this group has launched 19 clinical trials over the last decade.

Beat Nb worked with Dr Giselle Sholler and Genevieve Bergendahl to found the group. We remain intimately involved and dedicated to the progress that happens when bold parents, advocates, and researchers come together.

2017 By the Numbers

Revenue and Support


2017 (January 1 - December 31)

OPERATING REVENUE & OTHER SUPPORT 2017
Gifts, Grants, and Contributions             $ 690,720
Proceeds from Fund Raising Events 510,715
Less: Cost of Direct Benefits to Donors (158,529)
TOTAL SUPPORT AND REVENUES 1,042,906
EXPENSES  
Program Services (Childhood Cancer Clinical Trials and Research) 798,930
Administrative 63,906
Fund Raising 105,363
TOTAL EXPENSES 968,199
CHANGE IN NET ASSETS 74,707
UNRESTRICTED NET ASSETS (BEGINNING OF YEAR) 29,549
UNRESTRICTED NET ASSETS (END OF YEAR) 104,256

Growth in Total Revenue and Support


We continue to grow year over year (aside from an astounding 2014 when one donor gave $1 million!)

With your help, what started as a hope we could make a difference for kids fighting neuroblastoma has become an organization affecting real change.

THE BEAT NB FALMOUTH 2018 TEAM

Sign up at beatnb.org/falmouth to run next year.

Thank you for helping KIDS beat cancer.
Donate Today

Beat Nb is a 501(c)(3) • ©2018 • Our EIN is 27-2314549