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.
"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
International ECD Care Center Network
https://erdheim-chester.org/care-centers/
Consensus Recommendations for Evaluation, Diagnosis, and Treatment
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, [email protected], www.erdheim-chester.org
SOURCE ECD Global Alliance
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