named programs · 4 · from sources
What they call their work
Clinical Trial Reports
Provides summaries and evaluations of ongoing and completed clinical trials for cystic fibrosis treatments
Full Length Papers
Hosts peer-reviewed style academic papers on topics such as life coaching for CF patients, lung function, and home monitoring technologies
Legal Information
Shares resources on health insurance access and legal issues relevant to cystic fibrosis patients
Research Reports
Summarizes and publishes scientific findings on cystic fibrosis, including inhaled antibiotics, CFTR modulators, and microbial infections
activities · 4 groups
What they do
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Biomedical Research and Innovation 1 activity
- Conducting and publishing original research on cystic fibrosisProduces and publishes original research reports, abstracts, full-length papers, and clinical trial findings on cystic fibrosis, including studies on antibiotic therapies, CFTR modulators, lung function, microbial analysis, and novel monitoring technologies. Research is conducted through in vitro and in vivo studies, clinical trials, and literature reviews.
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Open Research Infrastructure & Publishing 1 activity
- Operating a publication review board for cystic fibrosis researchMaintains a review board that evaluates research reports, abstracts, full-length papers, and clinical trial reports for scientific quality and relevance prior to publication on the organization’s website.
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Disease-Specific Clinical & Patient Education 1 activity
- Summarizing and disseminating scientific and medical research on cystic fibrosisCompiles, summarizes, and publishes leading-edge scientific research and medical developments related to cystic fibrosis, including treatments and potential cures, to inform patients and healthcare providers. Provides access to this information through a routinely updated website blog and educational materials.
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Uncategorized 1 activity
- Summarizing and publishing legal and public policy developments related to cystic fibrosisReviews and disseminates information on emerging public policy and legal issues affecting the cystic fibrosis community, including health insurance and access to care, through scholarly articles and resources on its website.
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financials · form 990EZ · fy2024
revenue
Total revenue$475
Contributions & grants$475100%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$878
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$0
Cash—
Investments—
Liabilities—
Net assets$0
5 years on record · 2020–2024 · YoY revenue +309.5%
leadership · form 990 part vii · fy2024
Who runs it
board members · 2
- JOHN MEYER — MEMBER-BOARD
- MICHELLE WILSUSEN — MEMBER-BOARD
relationships · 4
Who they work with
- Cornell University Partner — Board member holds a CNLP certificate from this institution, indicating an educational affiliation.
- Harvard University Partner — Board member conducted empirical research at this institution during college, indicating a prior research affiliation.
- Northport Veterans Affairs Medical Center Partner — Board member has professional experience working at this institution, indicating a professional affiliation.
- State University of New York at Farmingdale Partner — Collaborates through board member service on the Farmingdale Horticultural Committee of the Farmingdale College Foundation.
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Evidence-Based Research Dissemination with Peer Reviewmethodology: evidence_based_research_disseminationBy conducting and disseminating peer-reviewed research through scholarly communication, the organization ensures credible, high-quality information reaches the public and scientific community, enhancing public understanding and advancing clinical knowledge because peer review filters for scientific validity and relevance.
- Monogenic Disorder Focus for Accelerated Treatment Developmentmethodology: monogenic_disease_prioritizationBy focusing on cystic fibrosis as a genetically well-defined, monogenic disorder, the organization enables the practical development of effective treatments using existing scientific methods, increasing the likelihood of near-term functional cures because single-gene diseases are more tractable targets for intervention.
- Public and Civic Education Through Information Translationmethodology: public_education_through_translationBy translating complex medical, scientific, and policy information into accessible formats, the organization promotes public education and informed civic engagement on cystic fibrosis because making specialized knowledge understandable increases public awareness, patient empowerment, and policy participation.