GOLD2023

Bens Gift Inc

To BEN-a-fit Children's National

aka Ben's Run   |   SILVER SPRING, MD   |  www.bensrun.org

Mission

Ben's Gift, Inc. seeks to dramatically improve the outcome for children fighting cancer by funding ground-breaking research and clinical trials by Dr. Kirsten Williams and her team at Children's National in the treatment of children whose leukemia returns even after a bone marrow transplant.

Ruling year info

2012

President

Mrs Clare Goldfogle

Main address

PO Box 4558

SILVER SPRING, MD 20914 USA

Show more contact info

EIN

45-3550053

NTEE code info

Cancer Research (H30)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Funding clinical trials for the sickest of the sick children who are battling cancer and who relapse after bone marrow transplants. Detecting cancer's return at an eariler point in time than previously ever thougth possible, and treating the patient sooner and with a different course of treatment to arrive at a better outcome.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

RESOLVE

RESOLVE, a promising new treatment Dr. Williams and Dr. Catherine Bollard developed with
Ben’s Run’s support, involves growing targeted cancer-fighting immune cells, or T-cells, that
are trained to recognize and attack leukemia cells. Before RESOLVE, if relapse was detected
or predicted, there was little care teams could do clinically, especially after bone marrow
transplant fails. Thanks to Ben’s Run, Dr. Williams and her team can now infuse these powerhitters
at regular intervals to eradicate low levels of leukemia and offer many young patients
and families something previously lost: hope.
While the investigation is still in its infancy, the results of RESOLVE are nonetheless impressive.
Of the 16 patients enrolled, 75% responded to the treatment, meaning that RESOLVE halted
or slowed leukemia growth. One of these patients has been cancer-free for more than a year,
the longest period since his relapse after BMT. With such impressive results over the past
years, this first phase of the investigation is nearing its conclusion, and Dr. Williams is actively
sharing her progress with the broader scientific community. In 2017, she presented at four
national and international meetings—acknowledging Ben’s Run’s support.

Population(s) Served
Children and youth

In prior years, bolstered by Ben’s Run’s support, Dr. Williams developed a groundbreaking
blood test that detects low levels of leukemia without an invasive bone marrow biopsy.
By testing the blood, clinicians can learn of relapse sooner and, ideally, before the disease
progresses or advances to other parts of the body.
This past year, Dr. Williams continued to push the boundaries of blood testing using a
new polymerase chain reaction (PCR) method. PCR is a technique commonly used in
molecular genetics; it amplifies DNA or RNA sections to permit analysis even on very
small samples. This is important in cancer research because there is much to learn about
leukemia and how our bodies fight cancer cells, but researchers had been previously
inhibited because existing methods require unfeasible amounts of blood to analyze.
Using this new PCR, Dr. Williams measures the levels of three distinct pieces of tumor
RNA, “tumor bits,” she calls them, which are present in blood even after leukemia is
no longer present in bone marrow. These tumor bits spike when relapse is imminent or
in its early phases, so this new blood analysis could help clinicians predict relapse and
potentially intervene. In comparison, if Dr. Williams were to attempt to do this type of
analysis using traditional PCR, she would require the entire research blood supply of
Children’s National to test just two of RNA segments. With new PCR, she can study three
segments with a fraction of material.

Population(s) Served
Children and youth

Thanks to support from Ben’s Run, Dr. Williams developed a painless methodology
to detect transplanted cell growth anywhere in the body. The approach uses
18Flurothymidine, or FLT, previously used to study lymphoma and leukemia
progression in adults; Dr. Williams is the first to translate this protocol for pediatrics.
Results are as fast and painless as a CT scan and reveal where in the body newly
transplanted cells grow, offering incredible insights into cellular activity at the most
critical post-transplant stage.
This past year, Dr. Williams made impressive strides in FLT research. She obtained an
Investigational New Drug (IND) Application from the Food and Drug Administration
(FDA), a comprehensive submission that enables her to begin formally using FLT to
treat patients at Children’s and marks the first step in bringing a new protocol to
market. With this IND, Dr. Williams will study the methodology of using FLT to see if
acute leukemia responds to RESOLVE, Dr. Williams’ promising new project that uses
a patient’s own immune cells to fight back against resilient or relapsed leukemia.
Importantly, the IND can also springboard additional applications to study future
protocols which will help to rapidly advance research on FLT in pediatric applications.
Dr. Williams’ results will be published in The Lancet Haematology, acknowledging
Ben’s Run at the start and conclusion of the paper. She is also planning a second paper
on the resulting analysis on how well her FLT imaging protocol detects leukemia.

Population(s) Served
Children and youth

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Find new approaches to treat and cure childhood cancer and other blood disorders.

Continue to fund the amazing reserach and trials of Dr. Kirsten Williams at Children's National in Washington DC in her work and in her work with Dr. Catherine Bollard at Children's to come up with new approaches and treatments. The funding we provide and results achieved by Dr. Williams allows larger grant money to be awarded to take this research further. It cannot begin without the seed money provided by orgainizations like Ben's Gift, Inc.

We are a 100% volunteer orgainzation with 8 years of experience in putting on a 5 Mile /5K/ 1 Mile event every year that raises in the neighborhood of $100,000 a year now to fund this research. Our largest donors are in the low thousands, most of the money raised consists of small donations and run registrations from our neighborhood community.

RESOLVE (growing targeted cancer-fighting immune cells, or T-cells, that
are trained to recognize and attack leukemia cells), PCR (measures the levels of three distinct pieces of tumor
RNA, “tumor bits,", which are present in blood even after leukemia is no longer present in bone marrow. These tumor bits spike when relapse is imminent or in its early phases, so this new blood analysis could help clinicians predict relapse and potentially intervene, and FLT (capturing the progression of cell growth within bone marrow. This information has the potential to inform further research into bone marrow transplantation and other fields.
"We couldn't do this research without Ben's Run. These new therapies would not have been possible as it is hard to seek and secure grants for brand new approaches. Thanks to Ben's Run, we are pursuing cutting edge therapies and ways to make transplant better for kids like Ben." Dr. Kirsten WIlliams

Financials

Bens Gift Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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Bens Gift Inc

Board of directors
as of 05/16/2023
SOURCE: Self-reported by organization
Board chair

Clare Goldfogle

Tom Goldfogle

Full Circle Entertertainnment, Inc

Cathy Schaupp

Marie Glass

Theresa Dowdall

Michelle Bridegum

Organizational demographics

SOURCE: Self-reported; last updated 8/11/2021

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability