Page 4 - Swifty Impact Report Sept 2023

THE IMPACT OF GIFT FROM A CHILD

OBJECTIVE #3:

Develop a strategic network of key partners across the pediatric brain cancer community
to increase awareness of GFAC.

Making a Great Relationship Even Better

One reason brain tumors are the leading cause of death by disease is no single hospital sees enough
children nor research lab has enough tissue specimens to conduct the research necessary to make
significant progress toward cures. To solve this problem, the Children’s Brain Tumor Network
(CBTN) has eliminated traditional walls that separate institutions allowing for greater collaboration.
This is why CBTN has been a strategic partner since Swifty began working on Michael’s Master
Plan in 2016. Well, we are delighted to report, our partnership just got a whole bunch stronger.

In the fall of 2022, Swifty formalized our partnership with CBTN whereby our organization’s respective
leadership teams are now working side by side to shape the future of Gift from a Child. The GFAC circle
of influence and impact has already grown exponentially! Here are some of the ways:

1. CBTN Observational Research Study – GFAC has 3. Oversight and innovation – CBTN leadership
become part of an observational feasibility clinical is joining us when we make our annual grant
research study arm of the CBTN. Becoming an official evaluations. Most importantly, they are working
part of the study will increase awareness, education, directly with our Regional Centers of Excellence to
training, and PM collections across the 32 children’s strengthen GFAC impact.
hospitals that make up CBTN. 4. Tissue Navigator Manager – As our regional centers
2. Keeping Parents Informed – The sophistication of expand in number, we’re in talks with CBTN about a
CBTN’s bio-repository and databanks will give us a new position…stay tuned!
much improved platform for keeping parents informed
about what is happening with their child’s donation.

SWIFTY SPOTLIGHT: Jena Lily A Mighty Force for Change

Jena Lilly is the Executive Director of CBTN It is a sad truth that DIPG/DMG, a diagnosis with
and the Director of Operations and nearly no hope of survival, is the tumor type
Strategic Planning for the Center
for Data Driven Discovery (D3b) our GFAC team facilitates most. The DIPG DMG
in Biomedicine. Currently, she Research Funding Alliance (DDRFA), fueled by
leads a team of over 90 people in 62 foundations and families is committed to
support of international pediatric launching the patient driven One Link Data Hub.
oncology research consortiums GFAC has been invited to be part of One Link
which combined, include over 30 Data Hub to make the choice of PM donation
pediatric hospitals. available to their families. These pioneering
data hubs put patients at the center of the
We are thrilled to have Jena as a healthcare system
partner as we grow GFAC’s reach across by empowering
the country. One of Jena’s great skills (one of
many!) is sitting at a brainstorm session and creating an them with
action plan out of the cascade of ideas. She brings focus, control over
a scientific mind, a great intellect and dedication to the their own
families and children we are serving. clinical data.
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