In April 2008, a few ECD caregivers, Carol, Kathy, and RuthAnn found each other via the internet. With a spirit of “If you build it, they will come,” an online chat session was scheduled for all those affected by ECD. What started with a group representing only six patients, now serves over 600 families worldwide.
Kathleen Brewer, President, and Co-founder of ECD Global Alliance is a woman filled with love, kindness, and compassion.
Kathy Brewer, ECDGA President
Kathy is a driven individual who was able to turn heartache into triumph. December 5, 1998, Kathy married the love of her life, Gary. Prior to their marriage, in the 1980s, Gary was a superintendent of Beauregard Parish Schools in Louisiana when he began having issues with his kidneys and high blood pressure. Doctors believed his issues were a direct result of his high-stress job. For nearly 20 years, Gary faced his progressing medical issues with no reprieve.
Read more…After his marriage to Kathy, new symptoms began adding to his medical file, including pain in his knees, shortness of breath, and worsening balance. With his continual decline and no answers, Kathy became vigilant with documenting and maintaining comprehensive medical files for Gary. Still, there were no definitive answers or treatments.
In 2004, Gary’s kidneys could no longer sustain and he was put on dialysis. In December, Gary’s son donated a kidney to his father with hopes of saving his life. Unfortunately, Gary’s health continued to decline. Kathy, feeling alone and helpless, put her strength and effort into doing all that she could to find help for her husband. She sent the meticulously kept records to universities, hospitals, and doctors around the United States searching for answers. Sadly, on July 3, 2007, Gary succumbed to his illness. Kathy kept her promise to never stop searching for answers. One month later the autopsy results returned. Diagnosis: Erdheim-Chester Disease.
Hope in Friendship
Over the years, although Gary was fighting a physical battle, Kathy was fighting a battle of her own. Not being knowledgeable about his illness, scared about what the future held, the unknowns, and feeling utterly helpless, left Kathy feeling alone. Kathy says “My family, a few doctors, nurses, and therapists were my lifeline. Everyone deserves a lifeline. No one should ever have to feel like that.”
Kathy’s perseverance through the trials and tragedy led her to what ECDGA is today. As Kathy was grieving the loss of Gary, she met two spouses online who were also dealing with their very ill husbands, who had been diagnosed with ECD. In April 2008, a few ECD caregivers, Carol, Kathy, and RuthAnn found each other via the internet. With a spirit of “If you build it, they will come” an online chat session was scheduled. Each shared their experiences, struggles, and difficulties for ECD patients and families. Geared with each other’s support, they began holding chat sessions to communicate with others who were touched by ECD. Kathy then arranged a teleconference with Dr. Razelle Kurzrock from MD Anderson and a few ECD patients. During this call, Dr. Kurzrock suggested starting a website to enhance communication. Quickly, Kathy reached out to a friend, Nick, to begin the process. Although Nick had no experience building a website, he graciously offered to take on the endeavor. The very first ECD website was established in 2008.
Mission to Find a Cure
With an established website and growing ECD community, patients and families encouraged Kathy to finally establish a formal 501(c)3 nonprofit organization. Alongside the parents of an ECD patient, who has since passed away, Kathy submitted the paperwork to make it official. On August 28, 2009, Erdheim-Chester Disease Global Alliance was officially born.
Where We Are Today
With the help of countless donors, volunteers, and medical professionals, the ECDGA has been able to support patients and research efforts around the world. Since its inception in 2008, the ECDGA has funded eight research projects and an ECD-dedicated patient registry, totaling over $700,000. This has resulted in effective treatment and mutation discoveries that have drastically improved the care for patients. Thirty-three ECD Care Centers have been identified to more effectively provide care to patients around the globe. Support has been provided to over 600 families from 60 countries through our website, events, awareness programs, and more.
Raise awareness of ECD. We strive to facilitate early diagnosis of the disease and to stimulate concern and efforts to increase knowledge regarding the disease and treatments.
Provide support to those affected by the disease. We will continue pursuing all avenues to lessen the burden as much as possible to those affected by ECD. This support will include, but not necessarily be limited to, providing information, referrals, and one-on-one contact with others affected by the disease.
Advocate for and support research programs. The purpose of such research programs is to learn more about (a) the disease, (b) effective treatments for the disease, (c) possible cures, and/or (d) avenues to prevent the disease altogether. This will include, but not necessarily be limited to, collaborating with medical personnel, research personnel, and other health organizations to help define areas where research is needed, to fund research, and to help promote the benefits of ECD research to other health agencies. The alliance will also serve as a conduit to transfer needed information from its members to the research community per documented guidelines.
Share educational material and facilitate information sharing among interested parties regarding ECD. This includes providing current, reliable, and factual information related to ECD to patients, loved ones, medical personnel, research personnel, media, and other organizations. It will also include promoting, sponsoring, and conducting workshops and symposia to promote the goals of the alliance.
Year | Accomplishment | Details |
2008 | ECD Caregivers Meet | In April 2008, six ECD caregivers found each other on the internet. |
First Chat Session Held | With a spirit of “If you build it, they will come,” an online chat session was scheduled for all those affected by ECD. We started with a group representing only six patients. Learn More | |
ECD Website Published | A website was created with the hope that it would provide much-needed information to families in search of answers for this rare illness. | |
2009 |
Dr. Augusto Vaglio’s Sirolimus Treatment Protocol | The Italy-based study was communicated with the ECDGA. |
Board of Directors Formed | The ECD Global Alliance Board of Directors was formed in order to execute the proper structure for the work of the organization. The board consisted of patients, family members of those affected by ECD, and community members willing to serve. | |
Medical Advisory Board Formed | This medical team volunteers their knowledge of the medical field and provides guidance to the organization on many projects, especially the grant award process. | |
2010 | 501(c)3 Tax Exemption Granted | ECDGA was granted federal tax exemption following the formation of the Board of Directors and Medical Advisory Board. |
2011 | First Grant Awarded to ECD Research | For the first time, $50,000 was awarded to an ECD researcher, and each year following. This progressive mission has enhanced research discoveries in Erdheim-Chester disease with the leading researchers and institutions in the field. A total of $650,000 has been granted toward this initiative to date. See all grants awarded annually here: Learn More. |
2013 | 1st ECD Patient & Family Gathering | ECD patients and their families came together for the first time this year and the annual event has been a successful way to bring families together ever since. Learn More |
1st ECD Medical Symposium | In addition to the patient meeting, the first international meeting was held this year, inviting doctors to present ECD research, case studies, and treatments. This meeting was also the catalyst for collaboration in developing the significant 2014 Blood Journal ECD Consensus document. Collaborative annual meetings have continued to take place around the world each year since. Learn More | |
2014 | 2nd ECD Patient & Family Gathering | Hosted by Dr. Juvianee Estrada-Veras and the NIH Clinical Center.
Patients and family members gather in Bethesda, MD for another two-day meeting including ECD presentations delivered by the experts. |
2nd International Medical Symposium | Physicians and researchers presented their work and discussed the state of Erdheim-Chester disease care for patients around the world. | |
2015 |
ECD Care Center Network | Care centers with ECD-knowledgeable medical teams began to form a network to support patients with care and consultation around the world. To date, the ECDGA collaborates with 32 ECD Care Centers serving patients. Learn More |
ECD Registry Grant Awarded | Over $300k was awarded to Dr. Eli L. Diamond and Dr. Matthew Collins in the development of the ECD Patient Registry. This will allow patients and physicians the opportunity to collaborate and lead research more effectively so that treatment and care can continue to improve and evolve. Learn More | |
3rd Annual Patient & Family Gathering | Hosted by Professor Filip Janku and MD Anderson Cancer Center.
Patients, families, and physicians collected in Houston, TX for a memorable two-day gathering. |
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3rd ECD Medical Symposium | The medical symposium was also hosted at MD Anderson Cancer Center. | |
New ECDGA Website | An updated website was developed to engage members on all devices. | |
2016 |
WHO Disease Classification | The World Health Organization declared ECD a histiocytic neoplasm. The March announcement represents a significant step toward improving support for patients. |
4th ECD Patient & Family Gathering | Hosted by Professor Julien Haroche and Hôpital Pitié-Salpêtrière.
The first European event, held in Paris, France, included 63 attendees from 17 different countries who heard from 16 physicians about ECD organ involvement, the use of scans to monitor the disease and its treatments, techniques to manage pain, and the latest research findings including treatment options. |
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4th ECD Medical Symposium | The first European medical symposium was held in Paris, France at Hôpital Pitié-Salpêtrière, where over 50 physicians gathered to collaborate and share data on ECD. |
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10 Languages Added to Website | Volunteers from around the globe dedicated their time and talents to translate important content in ten languages for the ECDGA website. | |
European Chapter Meeting | Members of the organization banded together to discuss the plan and procedures for forming a European Chapter of the ECDGA. | |
2017 |
1st FDA-Approved Drug: Vemurafenib (Zelboraf) | The Memorial Sloan Kettering Basket Trial led to favorable results for the Erdheim-Chester patients enrolled, eventually resulting in approval. The ECDGA assisted in the recruitment process to make this possible. |
Additional Care Centers Added to Network | Locations in Israel, China, Nashville, Canada, and Australia | |
Two Grand Round Medical Presentations | ECD-knowledgeable physicians were sponsored by the ECDGA to give educational talks at universities in Houston, TX, New Orleans, and Shreveport, LA. | |
Pathology Conference ECD Exhibit | The ECDGA medical community volunteered to create materials to educate attendees at an annual pathology conference. The ECDGA team hosted an exhibit booth, where they introduced and discussed ECD at length with pathologists around the world. | |
Annual Event in New York | Hosted by Eli L. Diamond and Memorial Sloan Kettering Cancer Center.
Patients, family members, nurses, research teams, and numerous physicians attended the 2017 Patient & Family Gathering held in New York. Attendees were brought up to date on the latest research, treatments, and care management techniques, including the psychological effects of living with ECD. Please see the event materials below for more information. |
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2018 | FDA drug approval | In the U.S., the federal drug administration (FDA) approved vemurafenib (Zelboraf) for the treatment of Erdheim-Chester disease in patients with the BRAFV600 mutation. This is the first-ever approved treatment for ECD. Learn More |
Hematology Exhibit Booth Held at ASH | Hematologists from around the world eagerly engage with ECDGA exhibitors to learn more about this rare disease. | |
Two New Care Centers in 2018 | California’s Stanford University and North Carolina’s Duke Cancer Institute were added to the ECD Care Center Network. | |
Grand Round Medical Presentations | ECD-knowledgeable physicians provided education on ECD at the University of Miami and Houston Methodist. | |
6th Annual Events held in Orlando, FL at Orlando Health | Hosted by Dr. Julio Hajdenberg and Orlando Health UF Health Cancer Center.
A total of 109 members from eight countries attended to learn about the drug trial process, how to manage multiple medications, how to care for yourself with nutrition and exercise, and about care management. Annually, the ECDGA hosts an ECD Care Center Network meeting, Medical Symposium, and Patient & Family Gathering consecutively. |
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2019 | Endocrinology Conference Booth Exhibit | The purpose of this 3-day exhibition was to generate awareness of ECD, communicate the recent research landscape and new treatment opportunities for patients, and facilitate the growth of the ECD Global Alliance medical professional network among interested physicians and scientists. In addition, we work to connect with other exhibitors offering services that can help the ECDGA further awareness and education of ECD. |
7th Annual Events held in Milan, Italy | Hosted by Dr. Lorenzo Dagna and IRCCS San Raffaele Scientific Institute Vita-Salute San Raffaele University.
The purpose of the ECD Medical Symposium is to unite international medical professionals in discussion and education of studies, experiences, and knowledge regarding Erdheim-Chester Disease. In this space, medical professionals are encouraged to present findings and knowledge to audience members. During the ECD Patient & Family Gathering, patients and family members are encouraged to ask questions, reach out and learn about the ultra-rare disease that affects their lives. |
Last updated: July 23, 2021
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