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.
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.
Executive Director, Beat Nb
A HOME FOR 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.
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.
Chief Investment Officer,
Csenge Advisory Group
Director, Ryan Callahan
Founder, Beat Nb
COO, Citisoft, Inc.
Anchor for NBC10
Boston and NECN
We are grateful to our outgoing board members for their dedication.
Owner, AP Insurance Group
Xuan "Sing" Hurt
Proprietor, Anise Global Gastrobar
Executive VP, Massachusetts Competitive Partnership (MACP)
Director of Environmental Services and Property Management, Mass. Dept. of Public Health
Co-founder, Because of Ezra
Attorney, Shankman Leone, PA
Director of Media Relations, Blue Cross Blue Shield of Massachusetts
The team behind Beat Nb's daily operations.
2018 Community Highlights
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|
|Program Services (Childhood Cancer Clinical Trials and Research)||798,930|
|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.