Mycology Advocacy, Research & Education (MYCARE) Foundation is dedicated to improving outcomes for patients with serious or invasive fungal infections. As we build our network, we will provide multiple opportunities to support our mission financially. For now, if you would like to contribute to MyCARE, please click the donate button.
CAN YOU RELATE?
Sharing your experience with Cocci can be a powerful experience. Thinking through your own experience–whether as a patient or a caregiver—can give you perspective and help you appreciate all of the hard work you have done battling Cocci. Your story can also provide hope to those at different stages in their own journey. Please consider click on the fungal infection below to share your experience in that area:
Learn about the disease, risk factors, diagnosis, treatment, and so much more!
MyCARE has been raising awareness of the importance of patient advocacy and building our network at:
MyCARE will be at the following meetings:
Fungal infections have received a lot of attention lately. For those impacted by these diseases and those caring for them as caregivers or clinicians, the attention is long overdue. In 2022, the World Health Organization released a priority list of fungal infections, identifying the fungal diseases of most concern. Hollywood also brought attention to fungal diseases through the series The Last of Us, and increased the amount of media attention surrounding these diseases. Often, the challenges of diagnosing and treating severe, chronic or invasive fungal infections (IFIs) is exacerbated by a lack of vetted information, guidance, institutional access, resources, and peer support for patients and their caregivers. Many patients and caregivers suffer in silence, not knowing where to turn when they hit informational, financial, or resource road blocks.
Patients with invasive or severe fungal infections need advocacy, but a pan-fungal advocacy effort has not been available–until now. Drawing upon the seminal patient-directed work of groups such as the Valley Fever Institute and the Mycoses Study Group Education & Research Foundation (MSGERC), we have launched Mycology Advocacy, Research & Education, MyCARE. MyCARE is the first pan-fungal patient advocacy effort. Learn more about our mission and our inaugural event, the Pan-Fungal Patient/Stakeholder IFI summit, held May 19-May 20th, 2023.
The mission of MYCARE includes education, including supporting stakeholders and elected representatives in their educational efforts.
Representative Michael Burgess, MD (TX-26) used his time at the House Energy & Commerce Hearing on “Antimicrobial Resistance: Examining an Emerging Public Health Threat” held on April 28, 2023 to educate the committee on the growing impact of Valley Fever and other fungal infections. MYCARE Founding Member Rob Purdie’s efforts are specifically mentioned in the response from Kevin Outterson, ESQ, Executive Director of CARB-X.
MyCARE is a valued educational resource for stakeholders, elected officials, media, the public, and most importantly, patients and caregivers. To continue our mission, we need your help. Please consider sharing your experience as well as what resources would be beneficial to you.
