![\"Help](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Post-1-fund-ecd-edited.png\")
<\/a><\/figure>Help the Next Family Find Answers.<\/h2><\/div>An Erdheim-Chester Disease diagnosis brings questions no family should have to navigate alone. Your support helps ECDGA provide trusted information, connections to experienced care, and a community that understands.<\/p>\n
Our Year-End Campaign begins today, with donations matched up to a total of $90,000.<\/p>\n
Give at fundecd.org<\/a>. Please share and help us reach the next family.<\/p>\n<\/div><\/article>![\"One](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Website-Graphic-1-edited.png\")
<\/a><\/figure>One family\u2019s search for answers became a place to turn<\/h2><\/div>Dear Friend,<\/p>\n
Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.<\/p>\n
For years, Gary\u2019s health declined without a diagnosis. Only an autopsy revealed Erdheim-Chester Disease.<\/p>\n
Kathy could not change what happened to Gary. She helped build something that would support the families who followed.<\/p>\n
In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a place where families could find information about a disease few people had heard of.<\/p>\n
That purpose continues through the Erdheim-Chester Disease Global Alliance.<\/p>\n
Your gift supports research, education, awareness, and patient support, helping families find information, knowledgeable care, and a community that understands.<\/p>\n
Our Year-End Campaign includes matching funds up to a total of $90,000.<\/strong><\/p>\nGive at fundecd.org<\/strong><\/a><\/p>\nHelp our families find answers.<\/p>\n
With gratitude,
\nThe Erdheim-Chester Disease Global Alliance<\/p>\n<\/div><\/article><\/a><\/figure>One Family\u2019s Search for Answers Became a Community<\/h2><\/div>Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.<\/p>\n
For years, Gary\u2019s health declined without a diagnosis, despite extensive evaluations at major medical centers. Only an autopsy revealed Erdheim-Chester Disease. That answer could no longer help Gary, but Kathy\u2019s determination to help other families would become part of a continuing story.<\/p>\n
In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a website where families could find information about a disease few people had heard of. Those beginnings helped build the Erdheim-Chester Disease Global Alliance.<\/p>\n
Families needed more than a disease name. They needed help understanding what came next, finding knowledgeable care, and connecting with people who understood their questions.<\/p>\n
That purpose continues today. Our Year-End Campaign, Help Our Families Find Answers, invites you to support research, education, awareness, and patient support. Your generosity helps keep information and connections available for someone newly diagnosed, a caregiver seeking guidance, or a patient looking for a physician with ECD experience.<\/p>\n
Donations will be matched up to a campaign total of $90,000. Your gift helps carry forward the reason this community began: making sure families have somewhere to turn.<\/p>\n
Please give at fundecd.org<\/a> and share this story with someone who would like to help.<\/p>\n<\/div><\/article>![\"Erdheim-Chester](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/11\/Year-End-Giving-Matching-Gift-Appeal.png\")
<\/a><\/figure>Erdheim-Chester Disease Global Alliance End of Year Campaign 2026<\/h2><\/div>Dear Community Member<\/p>\n
You have been part of the Erdheim-Chester Disease Global Alliance\u2019s work to bring support, information, and hope to people affected by ECD. We remain grateful for your past generosity, and we are writing to invite you to join us again during our 2026 End of Year Campaign<\/strong>.<\/strong><\/p>\nYour donation will be matched dollar for dollar, up to a total of $90,000 in matching funds for the campaign.<\/strong> While matching funds remain available, a gift of $50 becomes $100, $100 becomes $200, and $250 becomes $500 to support the ECD community.<\/p>\nFor a person newly diagnosed with Erdheim-Chester disease, the diagnosis can bring difficult questions. Where can I find a physician who understands this disease? What information can I trust? How will my family manage what comes next?<\/p>\n
Caregivers face questions of their own as they help coordinate appointments, support a loved one, and adjust to changing responsibilities. Having somewhere to turn for information and connection can help patients and families take their next steps.<\/p>\n
Your renewed support can help ECDGA meet these needs while continuing to invest in research.<\/p>\n
Through the generosity of donors like you, ECDGA works to:<\/p>\n
\n- Support patients and families<\/strong> by helping them find resources and connect with the ECD community.<\/li>\n
- Provide education<\/strong> through trusted information, webinars, and opportunities to learn from knowledgeable medical professionals.<\/li>\n
- Raise awareness<\/strong> so more people recognize ECD and understand the challenges it presents.<\/li>\n
- Fund research<\/strong> aimed at improving understanding, diagnosis, and treatment of this rare disease.These efforts depend on people who choose to give. Your past contribution helped sustain this work, and a gift today can help carry it forward.We recognize that circumstances change and that you have many worthy causes to consider. Whether you are able to renew your previous gift or give a different amount, we would be grateful to welcome you back as a donor. Every contribution is appreciated.Will you renew your support with a year-end gift?<\/strong> With the campaign match, your donation can provide twice the funding for ECDGA\u2019s mission while matching funds remain available.You can make your gift online at www.erdheim-chester.org<\/a> by selecting Donate, or mail a check payable to ECD Global Alliance<\/strong> to:Erdheim-Chester Disease Global Alliance
\nP.O. Box 775
\nDeRidder, LA 70634Thank you for the generosity you have already shown and for considering this invitation to give again. Your continued involvement can help patients and families find support today while helping researchers pursue better answers for tomorrow.With gratitude,Erdheim-Chester Disease Global AllianceP.S. Help us make the most of $90,000 in matching funds. Your gift will be matched dollar for dollar while funds remain available, doubling its support for the ECD community.<\/strong><\/li>\n<\/ul>\n<\/div><\/article>![\"Research](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/10\/LOI-Graphic-edited.png\")
<\/a><\/figure>Research Funding Opportunity<\/h2><\/div>The ECD Global Alliance is accepting Letters of Intent for its 2026 Early Career Investigator Grant. Up to $60,000 USD will be awarded for a two-year research project focused on Erdheim-Chester Disease or related adult histiocytic disorders.<\/p>\n
International submissions are welcome. Letters of Intent are due November 28, 2026.<\/p>\n
View the guidelines and apply: See information HERE<\/strong><\/a><\/p>\n<\/div><\/article><\/a><\/figure>Your ECD Research Idea Could Receive Up to $60,000<\/h2><\/div>Dear Colleagues,<\/p>\n
Could your next research project help advance our understanding of Erdheim-Chester disease?<\/p>\n
The Erdheim-Chester Disease Global Alliance (ECDGA)<\/strong> is accepting Letters of Intent for its Early Career Investigator Grant<\/strong>, offering up to $60,000 USD for a two-year project<\/strong> focused on ECD.<\/p>\nWe welcome proposals from investigators worldwide. Applicants must be within ten years of completing their terminal research degree, postdoctoral training, medical residency, fellowship, or equivalent, and must not have previously received an ECDGA Early Career Investigator Grant.<\/p>\n
Strong consideration will be given to projects that:<\/p>\n
\n- Encourage collaboration across institutions.<\/li>\n
- Translate research findings into clinical settings.<\/li>\n
- Utilize the ECD Patient Registry at Memorial Sloan Kettering.<\/li>\n<\/ul>\n
Letters of Intent are due November 28, 2026.<\/strong><\/p>\nPlease submit one PDF using the ECDGA 2026 LOI Submission Form, along with a project budget prepared using the ECDGA LOI Budget Proposal template.<\/p>\n
Review the complete grant guidelines<\/a>
\nSubmit your Letter of Intent<\/a><\/p>\nPlease share this opportunity with eligible colleagues whose work could contribute to better understanding and outcomes for people affected by ECD.<\/p>\n
For questions, contact Diane Schriner, ECDGA Board President, at Diane.Schriner@Erdheim-Chester.org<\/a> or +1-269-605-3680.<\/p>\nThank you for your commitment to advancing ECD research.<\/p>\n
Erdheim-Chester Disease Global Alliance<\/p>\n
<\/p>\n<\/div><\/article>![\"Funding](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/09\/LOI-Graphic-edited1.png\")
<\/a><\/figure>Funding Available: Up to $60,000 for Early Career Erdheim-Chester Disease Researchers<\/h2><\/div>The ECD Global Alliance invites early career investigators to submit Letters of Intent for research focused on Erdheim-Chester Disease.<\/p>\n
This funding opportunity provides up to $60,000 USD for a two-year research project<\/strong> that advances scientific understanding and helps improve outcomes for people affected by ECD.<\/p>\nWho can apply?<\/strong><\/p>\nApplicants must be within ten years of completing their terminal research degree, postdoctoral training, medical residency, fellowship, or equivalent. International submissions are welcome. Applicants must not have previously received an ECDGA Early Career Investigator Grant.<\/p>\n
Research priorities<\/strong><\/p>\nStrong consideration will be given to projects that:<\/p>\n
\n- Include collaboration across institutions<\/li>\n
- Translate research findings into clinical settings<\/li>\n
- Utilize the ECD Patient Registry at Memorial Sloan Kettering<\/li>\n<\/ul>\n
Submission requirements<\/strong><\/p>\nApplicants must submit one PDF using the ECDGA 2026 LOI Submission Form<\/strong>, along with a project budget prepared using the ECDGA LOI Budget Proposal template<\/strong>.\u00a0 Both of these can be found HERE!<\/a><\/p>\nReview the complete grant guidelines<\/a><\/p>\nLetters of Intent are due November 28, 2026.<\/strong><\/p>\nSubmit your Letter of Intent<\/a><\/p>\nFor questions, please contact Diane Schriner, ECDGA Board President, at Diane.Schriner@Erdheim-Chester.org<\/a> or +1-269-605-3680<\/a>.<\/p>\n <\/p>\n<\/div><\/article>![\"Introducing](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/09\/Mary-Picture-Sized.png\")
<\/a><\/figure>Introducing Mary Burgin Executive Director Erdheim-Chester Disease Global Alliance<\/h2><\/div>\u201cWe are excited to welcome Mary as our new Executive Director and look forward to the energy, experience, and passion she brings to our mission and our community.\u201d \u2013 Diane Schriner, President of the Board of Directors<\/p>\n
Leadership Announcement<\/strong><\/p>\nMary Burgin is honored to serve as the new Executive Director of the Erdheim-Chester Disease Global Alliance. With more than 24 years of healthcare operations experience, Mary has dedicated her career to improving organizational performance, advancing patient-centered initiatives, and supporting meaningful healthcare outcomes.<\/p>\n
Throughout a diverse healthcare leadership career, Mary has led operational strategy, strengthened organizational effectiveness, built high-performing teams, and directed programs designed to improve both patient and organizational success.<\/p>\n
In this role, Mary looks forward to partnering with patients, caregivers, healthcare professionals, researchers, industry partners, and advocates to further the Alliance\u2019s mission of improving the lives of individuals and families affected by Erdheim-Chester Disease. Mary is committed to fostering collaboration, supporting innovation, expanding community engagement, and helping guide the Alliance through its next stage of growth and impact.<\/p>\n
Key Focus Areas<\/p>\n
\n- Patient-centered advocacy<\/li>\n
- Community engagement and support<\/li>\n
- Research collaboration and awareness<\/li>\n
- Organizational growth and operational excellence<\/li>\n<\/ul>\n<\/div><\/article>
![\"Arabic](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/09\/arabic.png\")
<\/a><\/figure>Arabic Webinar with Dr. Hind Salama, Consultant in Hematology and Oncology in Riyadh, Saudi Arabia: Erdheim-Chester Disease (ECD): An Educational guidance to Patients, Families, and Medical Professionals<\/h2><\/div>
An Erdheim-Chester Disease diagnosis brings questions no family should have to navigate alone. Your support helps ECDGA provide trusted information, connections to experienced care, and a community that understands.<\/p>\n
Our Year-End Campaign begins today, with donations matched up to a total of $90,000.<\/p>\n
Give at fundecd.org<\/a>. Please share and help us reach the next family.<\/p>\n<\/div><\/article> Dear Friend,<\/p>\n Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.<\/p>\n For years, Gary\u2019s health declined without a diagnosis. Only an autopsy revealed Erdheim-Chester Disease.<\/p>\n Kathy could not change what happened to Gary. She helped build something that would support the families who followed.<\/p>\n In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a place where families could find information about a disease few people had heard of.<\/p>\n That purpose continues through the Erdheim-Chester Disease Global Alliance.<\/p>\n Your gift supports research, education, awareness, and patient support, helping families find information, knowledgeable care, and a community that understands.<\/p>\n Our Year-End Campaign includes matching funds up to a total of $90,000.<\/strong><\/p>\n Give at fundecd.org<\/strong><\/a><\/p>\n Help our families find answers.<\/p>\n With gratitude, Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death.<\/p>\n For years, Gary\u2019s health declined without a diagnosis, despite extensive evaluations at major medical centers. Only an autopsy revealed Erdheim-Chester Disease. That answer could no longer help Gary, but Kathy\u2019s determination to help other families would become part of a continuing story.<\/p>\n In 2008, Kathy and other caregivers connected online in a group initially representing just six patients. They began creating a website where families could find information about a disease few people had heard of. Those beginnings helped build the Erdheim-Chester Disease Global Alliance.<\/p>\n Families needed more than a disease name. They needed help understanding what came next, finding knowledgeable care, and connecting with people who understood their questions.<\/p>\n That purpose continues today. Our Year-End Campaign, Help Our Families Find Answers, invites you to support research, education, awareness, and patient support. Your generosity helps keep information and connections available for someone newly diagnosed, a caregiver seeking guidance, or a patient looking for a physician with ECD experience.<\/p>\n Donations will be matched up to a campaign total of $90,000. Your gift helps carry forward the reason this community began: making sure families have somewhere to turn.<\/p>\n Please give at fundecd.org<\/a> and share this story with someone who would like to help.<\/p>\n<\/div><\/article> Dear Community Member<\/p>\n You have been part of the Erdheim-Chester Disease Global Alliance\u2019s work to bring support, information, and hope to people affected by ECD. We remain grateful for your past generosity, and we are writing to invite you to join us again during our 2026 End of Year Campaign<\/strong>.<\/strong><\/p>\n Your donation will be matched dollar for dollar, up to a total of $90,000 in matching funds for the campaign.<\/strong> While matching funds remain available, a gift of $50 becomes $100, $100 becomes $200, and $250 becomes $500 to support the ECD community.<\/p>\n For a person newly diagnosed with Erdheim-Chester disease, the diagnosis can bring difficult questions. Where can I find a physician who understands this disease? What information can I trust? How will my family manage what comes next?<\/p>\n Caregivers face questions of their own as they help coordinate appointments, support a loved one, and adjust to changing responsibilities. Having somewhere to turn for information and connection can help patients and families take their next steps.<\/p>\n Your renewed support can help ECDGA meet these needs while continuing to invest in research.<\/p>\n Through the generosity of donors like you, ECDGA works to:<\/p>\n The ECD Global Alliance is accepting Letters of Intent for its 2026 Early Career Investigator Grant. Up to $60,000 USD will be awarded for a two-year research project focused on Erdheim-Chester Disease or related adult histiocytic disorders.<\/p>\n International submissions are welcome. Letters of Intent are due November 28, 2026.<\/p>\n View the guidelines and apply: See information HERE<\/strong><\/a><\/p>\n<\/div><\/article> Dear Colleagues,<\/p>\n Could your next research project help advance our understanding of Erdheim-Chester disease?<\/p>\n The Erdheim-Chester Disease Global Alliance (ECDGA)<\/strong> is accepting Letters of Intent for its Early Career Investigator Grant<\/strong>, offering up to $60,000 USD for a two-year project<\/strong> focused on ECD.<\/p>\n We welcome proposals from investigators worldwide. Applicants must be within ten years of completing their terminal research degree, postdoctoral training, medical residency, fellowship, or equivalent, and must not have previously received an ECDGA Early Career Investigator Grant.<\/p>\n Strong consideration will be given to projects that:<\/p>\n Letters of Intent are due November 28, 2026.<\/strong><\/p>\n Please submit one PDF using the ECDGA 2026 LOI Submission Form, along with a project budget prepared using the ECDGA LOI Budget Proposal template.<\/p>\n Review the complete grant guidelines<\/a> Please share this opportunity with eligible colleagues whose work could contribute to better understanding and outcomes for people affected by ECD.<\/p>\n For questions, contact Diane Schriner, ECDGA Board President, at Diane.Schriner@Erdheim-Chester.org<\/a> or +1-269-605-3680.<\/p>\n Thank you for your commitment to advancing ECD research.<\/p>\n Erdheim-Chester Disease Global Alliance<\/p>\n <\/p>\n<\/div><\/article> The ECD Global Alliance invites early career investigators to submit Letters of Intent for research focused on Erdheim-Chester Disease.<\/p>\n This funding opportunity provides up to $60,000 USD for a two-year research project<\/strong> that advances scientific understanding and helps improve outcomes for people affected by ECD.<\/p>\n Who can apply?<\/strong><\/p>\n Applicants must be within ten years of completing their terminal research degree, postdoctoral training, medical residency, fellowship, or equivalent. International submissions are welcome. Applicants must not have previously received an ECDGA Early Career Investigator Grant.<\/p>\n Research priorities<\/strong><\/p>\n Strong consideration will be given to projects that:<\/p>\n Submission requirements<\/strong><\/p>\n Applicants must submit one PDF using the ECDGA 2026 LOI Submission Form<\/strong>, along with a project budget prepared using the ECDGA LOI Budget Proposal template<\/strong>.\u00a0 Both of these can be found HERE!<\/a><\/p>\n Review the complete grant guidelines<\/a><\/p>\n Letters of Intent are due November 28, 2026.<\/strong><\/p>\n Submit your Letter of Intent<\/a><\/p>\n For questions, please contact Diane Schriner, ECDGA Board President, at Diane.Schriner@Erdheim-Chester.org<\/a> or +1-269-605-3680<\/a>.<\/p>\n <\/p>\n<\/div><\/article> \u201cWe are excited to welcome Mary as our new Executive Director and look forward to the energy, experience, and passion she brings to our mission and our community.\u201d \u2013 Diane Schriner, President of the Board of Directors<\/p>\n Leadership Announcement<\/strong><\/p>\n Mary Burgin is honored to serve as the new Executive Director of the Erdheim-Chester Disease Global Alliance. With more than 24 years of healthcare operations experience, Mary has dedicated her career to improving organizational performance, advancing patient-centered initiatives, and supporting meaningful healthcare outcomes.<\/p>\n Throughout a diverse healthcare leadership career, Mary has led operational strategy, strengthened organizational effectiveness, built high-performing teams, and directed programs designed to improve both patient and organizational success.<\/p>\n In this role, Mary looks forward to partnering with patients, caregivers, healthcare professionals, researchers, industry partners, and advocates to further the Alliance\u2019s mission of improving the lives of individuals and families affected by Erdheim-Chester Disease. Mary is committed to fostering collaboration, supporting innovation, expanding community engagement, and helping guide the Alliance through its next stage of growth and impact.<\/p>\n Key Focus Areas<\/p>\n<\/a><\/figure>One family\u2019s search for answers became a place to turn<\/h2><\/div>
\nThe Erdheim-Chester Disease Global Alliance<\/p>\n<\/div><\/article><\/a><\/figure>One Family\u2019s Search for Answers Became a Community<\/h2><\/div>
<\/a><\/figure>Erdheim-Chester Disease Global Alliance End of Year Campaign 2026<\/h2><\/div>
\n
\nP.O. Box 775
\nDeRidder, LA 70634Thank you for the generosity you have already shown and for considering this invitation to give again. Your continued involvement can help patients and families find support today while helping researchers pursue better answers for tomorrow.With gratitude,Erdheim-Chester Disease Global AllianceP.S. Help us make the most of $90,000 in matching funds. Your gift will be matched dollar for dollar while funds remain available, doubling its support for the ECD community.<\/strong><\/li>\n<\/ul>\n<\/div><\/article><\/a><\/figure>Research Funding Opportunity<\/h2><\/div>
<\/a><\/figure>Your ECD Research Idea Could Receive Up to $60,000<\/h2><\/div>
\n
\nSubmit your Letter of Intent<\/a><\/p>\n<\/a><\/figure>Funding Available: Up to $60,000 for Early Career Erdheim-Chester Disease Researchers<\/h2><\/div>
\n
<\/a><\/figure>Introducing Mary Burgin Executive Director Erdheim-Chester Disease Global Alliance<\/h2><\/div>
\n
<\/a><\/figure>Arabic Webinar with Dr. Hind Salama, Consultant in Hematology and Oncology in Riyadh, Saudi Arabia: Erdheim-Chester Disease (ECD): An Educational guidance to Patients, Families, and Medical Professionals<\/h2><\/div>