activities · 14
what they do
direct service · 7
- Collecting and Sharing SCAD Survivor Stories Patient and Family Storytelling ProgramsCollects, produces, and distributes personal written and video stories from individuals affected by SCAD through its website and YouTube channel to support recovery and community building. Includes stories gathered during 5K SCADaddle weekends and a virtual event in 2020, featuring interviews with 12 survivors.
- Distributing SCAD Educational MaterialsCreates and distributes educational brochures about SCAD tailored to different audiences to improve awareness and understanding of the condition.
- Organizing 5K SCADaddle© for Research EventsOrganizes annual 5K SCADaddle© run/walk events in multiple locations across the United States to raise funds and awareness for SCAD research. These events have also served as venues for collecting survivor stories and conducting interviews.
- SCAD Educational Material DistributionCreates and distributes educational brochures about SCAD to various audiences.
- SCAD Educational Material DistributionCreates and distributes educational brochures about SCAD to various audiences to increase understanding of the condition.
- SCAD Patient Story Collection and Sharing Patient and Family Storytelling ProgramsCollects and shares personal written and video stories from individuals affected by SCAD through its website and YouTube channel to provide support and raise awareness.
- SCAD Patient Story Collection and Sharing Patient and Family Storytelling ProgramsCollects and shares personal written and video stories from individuals affected by SCAD through its website and YouTube channel, providing support and educational resources for others.
research · 4
- Operating the Global SCAD Registry Funding and Support for Disease-Specific Clinical ResearchDeveloped and maintains the largest known SCAD registry in the world, which has contributed to key epidemiological insights, including that SCAD is far more common than previously believed. The registry supports ongoing research and facilitates global patient participation in studies.
- SCAD Research Program Development and Support Funding and Support for Disease-Specific Clinical ResearchEstablished and continues to support the Mayo Clinic SCAD Research Program, contributing to the development of the largest known SCAD registry and facilitating global participation in SCAD research studies.
- SCAD Research Program Support and Development Funding and Support for Disease-Specific Clinical ResearchEstablished and supports the Mayo Clinic SCAD Research Program, contributing to the development of the world's largest SCAD registry and facilitating global patient participation in SCAD research studies.
- Supporting SCAD Research Program Development Funding and Support for Disease-Specific Clinical ResearchPlayed a foundational role in establishing the Mayo Clinic SCAD Research Program in 2010, based on a research agenda initiated by SCAD survivors. This includes ongoing collaboration and funding to advance clinical research.
capacity building · 3
- Funding SCAD Research at Mayo Clinic Funding and Support for Disease-Specific Clinical ResearchRaises and donates funds to support clinical trials and research on Spontaneous Coronary Artery Dissection (SCAD), primarily directed to the Mayo Clinic SCAD Research Program. As of the latest evidence, has donated over $1.6 million to research, with prior totals reported at $965,000 as of December 2019.
- Fundraising for SCAD Research Funding and Support for Disease-Specific Clinical ResearchRaises funds through events like 5K SCADaddle© for Research run/walks and direct donations to support clinical trials and research programs on Spontaneous Coronary Artery Dissection (SCAD), primarily at the Mayo Clinic SCAD Research Program.
- Fundraising for SCAD Research Funding and Support for Disease-Specific Clinical ResearchRaises funds through events like 5K SCADaddle© for Research run/walks and direct donations to support clinical trials and research programs on Spontaneous Coronary Artery Dissection (SCAD), primarily at Mayo Clinic. As of December 2019, over $965,000 has been donated, with total donations exceeding $1.6 million.
strategies · 14
how they think
Theories of action extracted from this org's own source material. Click any to see the full field of orgs running the same approach.
- Advocating for conservative SCAD management conservative_managementThe organization advocates for conservative, non-invasive management approaches for stable SCAD patients, emphasizing the body's natural healing processes and careful inpatient monitoring.
- Advocating for conservative management of SCAD conservative_managementThe organization advocates for a conservative, non-invasive approach to managing stable SCAD patients, emphasizing the body's natural vascular healing processes and inpatient monitoring.
- Conservative clinical management advocacy conservative_managementAdvocates for non-invasive, conservative treatment of stable SCAD patients, emphasizing spontaneous healing and careful inpatient monitoring over aggressive interventions.
- Funding and supporting SCAD research research_funding_and_supportThe organization identifies and funds promising clinical studies and vital research to discover the causes and treatments of Spontaneous Coronary Artery Dissection (SCAD), particularly focusing on a condition that predominantly affects young, healthy women.
- Funding and supporting SCAD research research_funding_and_supportThe organization identifies and funds promising clinical studies and vital research to discover the causes and optimal treatments for Spontaneous Coronary Artery Dissection (SCAD), particularly focusing on a patient-initiated research model that leverages survivor-driven data.
- Leveraging patient storytelling for support and awareness patient_storytellingThe organization utilizes the sharing of personal survivor stories to provide support, healing, and encouragement to individuals and families affected by SCAD, foster community bonding, memorialize those lost, and amplify patient voices for fundraising and awareness.
- Leveraging personal stories for support and awareness storytelling_for_support_and_awarenessThe organization utilizes the sharing of personal survivor stories to support individuals and families affected by SCAD, raise awareness, provide healing and encouragement, facilitate bonding, and memorialize those who did not survive.
- Patient-driven research and data collection patient-driven_researchThe organization leverages survivor-driven data collection and social networking to guide research priorities, ensuring that research is initiated and informed by patient experiences and needs.
- Patient-driven research model patient-driven_researchUses a survivor-initiated, patient-led approach to research, leveraging personal data collection and social networks to identify research priorities and advance understanding of SCAD.
- Raising awareness and providing education on SCAD awareness_and_educationThe organization uses targeted educational materials and information dissemination to raise awareness about SCAD among the general public, medical professionals, and first responders, and to inform SCAD survivors and their families.
- Raising awareness and providing education on SCAD awareness_and_educationThe organization uses targeted educational materials and information dissemination to raise awareness about SCAD among the general public, medical professionals, and first responders, and to provide information to SCAD survivors and their families.
- Storytelling for awareness and peer support storytelling for awareness and supportUses personal survivor stories to raise public and medical awareness, support emotional healing, build community among affected individuals, and honor those who have died from SCAD.
- Sustained funding to support research sustained_funding_modelRelies on ongoing financial and in-kind contributions from individuals, businesses, and organizations to fund high-impact SCAD research, particularly at the Mayo Clinic SCAD Research Program.
- Targeted education for medical and public audiences awareness_through_educational_materialsDisseminates educational materials to increase SCAD awareness among healthcare providers, first responders, and the general public to improve diagnosis and response.
named programs · 3
what they call their work
Mayo Clinic SCAD Research Program Support
Provides funding and support for the Mayo Clinic SCAD Research Program, the largest known SCAD registry in the world, focused on understanding causes, risk factors, diagnosis, treatment, and prevention of SCAD
Patient Education and Awareness
Offers evidence-based educational materials about SCAD, including symptoms, diagnosis, treatment, recurrence, and coping strategies, based on research as of 2017 and updated findings
SCAD Survivor Stories
Shares personal narratives from individuals affected by SCAD to foster connection, reduce isolation, and raise awareness about the condition
relationships · 33
who they work with
- Anonymous Family Foundation Funder — Nationwide sponsor of SCADaddle events, contributing $10,000+ in 2024.
- Bingham Farms Oral & Maxillofacial Surgery Funder — Patron sponsor of SCADaddle events, contributing $1,000+ in 2024.
- Binson’s Medical Equipment Funder — Partner sponsor of SCADaddle events, contributing $500+ in 2024.
- C4 Technical Services Funder — Patron sponsor of SCADaddle events, contributing $1,000+ in 2024.
- Corporate Sponsors Partner — Businesses that provide significant financial and in-kind support for SCAD research and education.
- DesignPoint Inc. Funder — Partner sponsor of SCADaddle events, contributing $500+ in 2024.
- Dr. Sharonne Hayes Partner — Leads the Mayo Clinic SCAD Research Program in collaboration with SCAD Research, Inc.
- Dugan & Lopatka, CPAs Funder — Partner sponsor of SCADaddle events, contributing $500+ in 2024.
- Event Sponsors Partner — Businesses, organizations, or individuals that sponsor specific fundraising events such as the 5K SCADaddle© for Research run/walks.
- HSA Mechanical Funder — Supporting sponsor of SCADaddle events, contributing $2,500+ in 2024.
- Henry Ford Heart and Vascular Funder — Partner sponsor of SCADaddle events, contributing $500+ in 2024.
- JM Flooring Funder — Patron sponsor of SCADaddle events, contributing $1,000+ in 2024.
- LA Smith Construction LLC Funder — Partner sponsor of SCADaddle events, contributing $500+ in 2024.
- Lehigh Valley Heart and Vascular Institute Funder — Patron sponsor of SCADaddle events, contributing $1,000+ in 2024.
- Mayo Clinic Partner — Collaborates on the SCAD Research Program led by Dr. Sharonne Hayes
- Mayo Clinic Partner — Partner organization conducting SCAD clinical trials funded or supported by SCAD Research, Inc.
- Mayo Clinic Partner — Primary recipient of research funding for the SCAD Research Program.
- Mayo Clinic Partner — Provides links to Mayo Clinic's SCAD Research Program information, including research projects, clinical trials, and resources for medical professionals.
- Mayo Clinic SCAD Research Program Partner — Recipient of most of SCAD Research, Inc.'s funding for groundbreaking research, directed by Dr. Sharonne Hayes.
- Mayo Clinic SCAD Research Program Partner — Reviewed and provided input on SCAD awareness brochures.
- McComesey Law Funder — Patron sponsor of SCADaddle events, contributing $1,000+ in 2024.
- Millennium Cardiology Funder — Supporting sponsor of SCADaddle events, contributing $2,500+ in 2024.
- My Virtual Academy Funder — Partner sponsor of SCADaddle events, contributing $500+ in 2024.
- NOVA Marketing Services Partner — Provided expertise in redesigning SCAD awareness brochures.
- Nick D’Orazio Partner — Captured many stories at SCADaddle weekends and created videos.
- Nick D’Orazio Partner — Skilled videographer who captured Voices of SCAD stories; contributed creative expertise to document survivor experiences.
- Pentech Industries Funder — Patron sponsor of SCADaddle events, contributing $1,000+ in 2024.
- RJ Construction Funder — Supporting sponsor of SCADaddle events, contributing $2,500+ in 2024.
- Schram Family Charity Trust Funder — Partner sponsor of SCADaddle events, contributing $500+ in 2024.
- Sustaining Sponsors Partner — Businesses, organizations, or individuals providing ongoing financial or in-kind donations and services such as consulting, media exposure, or legal support.
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