Those directly impacted by Erdheim-Chester disease fuel
biomedical innovation and improve quality of care
DERIDDER, La., May 15, 2024
/PRNewswire-PRWeb/ -- The Frame Family Foundation has awarded the
Erdheim-Chester Disease (ECD) Global Alliance $25,000 in 2024 to support biomedical research,
address information silos among medical specialties, and provide
patient and caregiver support to people living with ECD, an
ultra-rare histiocytic neoplasm often classified as a rare blood
cancer. Other beneficiaries are South Sound Care Foundation, of
Tacoma, Washington, receiving
$25,000 and Memorial Sloan-Kettering
Cancer Center in New York,
receiving $50,000 for total
commitments nearing $2 million since
2017. The funds to date have led to groundbreaking FDA-approval for
two therapies to treat ECD.
"When we invest in rare diseases like
Erdheim-Chester disease, we better understand the trajectory of
rare cancer and find ways to reduce human suffering," said D.
William "Bill" Frame, III, CEO and Chairman of Kidder Mathews and founder of the Frame Family
Foundation.
"We're honored to be able to provide a place for advocates in
our community to come together to advance research, awareness, and
support," said Kathleen Brewer,
President of the Board of Directors and founder of the Louisiana-based ECD Global Alliance. "Bill's
commitment to ending ECD, borne out of his personal experience
caring for and loving his wife Tracie, reflects the leadership I
see everyday in our community. I'm humbled that they would support
our work and continue to invest in the scientific and medical
ecosystem that supports most people affected by ECD."
Erdheim-Chester disease is a multi-system disorder that impacts
approximately 2,000 people worldwide. Typically, adults are
diagnosed at midlife, between 40 and 70 years old. The condition
can affect neurological function, pain level (especially in long
bones such as the legs), kidney and endocrine function, lung and
heart function, and the skin, among other issues. Current
treatments target mutations in the MAPK pathway and, for many,
significantly improve the quality of life and prognosis for people
with ECD. Others, however, are still looking for treatments that
can address the complex presentation of the cancer, which often
goes underdiagnosed or undiagnosed.
"We've done a lot as a community in the last seven years, but
it's too early to rest on our laurels," said D. William "Bill"
Frame, III, CEO and Chairman of Kidder
Mathews and founder of the Frame Family Foundation.
"Evidence-based consensus guidelines for physicians and new
biomedical therapies have improved our understanding of how to
treat ECD and histiocytic disorders in general. When we invest in
rare diseases like Erdheim-Chester disease, we better understand
the trajectory of rare cancer and find ways to reduce human
suffering."
"My brother and I, and the rest of our family, applaud the work
of the ECD Global Alliance. This is tough work in a space few
people have ever heard of. We hope our efforts to raise money for
this rare disease will serve as an inspiration for others to do
what they can to help," said Susannah
Frame, a nationally recognized investigative reporter for
the NBC affiliate in Seattle and
board member of the foundation. "When my sister-in-law was
diagnosed with ECD seven years ago, the ECD Global Alliance was the
first place we turned to for advice and help. We'll never forget
that meaningful support during a very difficult and frightening
time."
The ECD Global Alliance hosts a global network of more than 40
medical institutions operating as "ECD Care Centers." Care Centers
include medical institutions such as Memorial Sloan Kettering
Cancer Center, Fred Hutch Cancer Center, the Mayo Clinic, and
others that accept patients with ECD, offer referrals and
information on ECD, and often consult with physicians who are
treating patients with suspected or confirmed ECD. Working with the
Memorial Sloan-Kettering Cancer Center, the ECD Global Alliance
launched a patient data registry in 2018, which has connected
patients with clinical research and supported clinical trials
needed to gain FDA approval of new treatments for ECD. With a
growing network of medical professionals and research scientists,
the ECD Global Alliance has pushed for collaboration and alignment
across medical disciplines, which has yielded new resources such as
the peer-reviewed Consensus Recommendations for diagnosis and
treatment, published in 2020 in Blood, the peer-reviewed journal
for the American Society of Hematology (ASH).
"What I like about the ECD Global Alliance is their innovative
approach, not unlike many of the entrepreneurs and innovators from
the Seattle area," said Mr. Frame.
"They started in a one-room office in an old school building in
southwest Louisiana, with just a
handful of people trying to make sense of this disease and the
helplessness so many of us have felt at times. From that authentic,
humble beginning, they've brought together a global network, pushed
for two FDA-approved therapies, and invested over $1.2 million in new research for ECD in the last
fifteen years. I'm excited to see what they do next."
RESOURCES
The ECD Global Alliance
https://erdheim-chester.org/
International ECD Care Center Network
https://erdheim-chester.org/care-centers/
Consensus Recommendations for Evaluation, Diagnosis, and
Treatment
https://ashpublications.org/blood/article/135/22/1929/452713/Erdheim-Chester-disease-consensus-recommendations
ABOUT THE ECD GLOBAL ALLIANCE
Founded in 2008, the ECD Global Alliance is a 501(c)(3)
nonprofit organization dedicated to awareness, support, education,
and research related to Erdheim-Chester disease. ECD is an
ultra-rare, multi-system blood cancer which affects an estimated
2,000 people worldwide. Working directly with people who have ECD,
their families, and the medical professionals who care for them,
the ECD Global Alliance has provided support to more than 900
patients from 71 countries, invested over $1.2 million in clinical
research on ECD, and maintained a network of ECD Care Centers
representing more than 40 medical institutions around the world.
Powered by volunteers with lived experience and those with research
or clinical interests in ECD, the organization is supported
primarily by individual contributions from patients and family
caregivers. Learn more about the ECD Global Alliance, donate, and
get involved at www.erdheim-chester.org.
Media Contact
C. Grace Whiting, ECD Global
Alliance, 1 337-202-5200 402, grace@erdheim-chester.org,
www.erdheim-chester.org
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SOURCE ECD Global Alliance