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Source: IRS Form 990 via ProPublica Nonprofit Explorer
Total Revenue
▼$579.3K
Total Contributions
$559.9K
Total Expenses
▼$611.3K
Total Assets
$546.1K
Total Liabilities
▼$306.2K
Net Assets
$239.9K
Officer Compensation
→$100.8K
Other Salaries
$307K
Investment Income
▼$19.4K
Fundraising
▼$0
Source: USAspending.gov · Searched by organization name
Total Federal Funding
$30K
Awards Found
2
| Awarding Agency | Description | Amount | Fiscal Year | Period |
|---|---|---|---|---|
| Department of Health and Human Services | 2022 CONGENITAL MUSCLE DISEASE SCIENTIFIC SYMPOSIUM - CURE CMD (CURE CONGENITAL MUSCULAR DYSTROPHY) SEEKS SUPPORT FROM THE NATIONAL INSTITUTES OF HEALTH TO COLLABORATE WITH ALIGNED PATIENT ADVOCACY ORGANIZATIONS A FOUNDATION BUILDING STRENGTH (AFBS, FOCUSED ON NEMALINE MYOPATHY OR NM) AND TEAM TITIN (FOCUSED ON TITINOPATHY OR TTN) FOR THE 2022 CONGENITAL MUSCLE DISEASE SCIENTIFIC SYMPOSIUM, TO BE HELD JUNE 30 - JULY 3, 2022. WITH SIGNIFICANT OVERLAP IN SYMPTOMATOLOGY, CARE MANAGEMENT, AND RESEARCH COMMUNITIES, REPRESENTATIVES FROM EACH ORGANIZATION BELIEVE ATTENDEES WILL BENEFIT SIGNIFICANTLY FROM INFORMATION EXCHANGE AND COLLABORATION. THE ULTIMATE AIM OF THE MEETING IS TO ACCELERATE PROGRESS TOWARD CLINICAL TRIALS, TREATMENTS, AND EVENTUALLY, A CURE FOR CONGENITAL MUSCLE DISORDERS. THE 2022 EVENT WOULD BE THE SECOND MEETING OF THIS TYPE, AND IN THE TWO YEARS SINCE THE MEETING, MULTIPLE ADVANCEMENTS HAVE BEEN MADE FOR EACH OF THE THREE CONDITIONS REPRESENTED AT THE CONFERENCE. KEY OBJECTIVES ARE TO: - INTRODUCE NEW CONGENITAL MUSCLE DISEASE-FOCUSED RESEARCH PROJECTS. THE HOST PATIENT ADVOCACY GROUPS ARE FUNDING 13 NEW RESEARCH PROJECTS SINCE 2019’S IN-PERSON CONVENING; - DISCUSS NEXT STEPS FOR CREATING INNOVATIVE PLATFORMS LIKE THE NCATS-LED PLATFORM VECTOR GENE THERAPY (PAVE-GT), TAKING ADVANTAGE OF COMMON MUTATION CLASSES AND PATHOPHYSIOLOGICAL PATHWAYS ACROSS CMD SUBTYPES; - ASSESS AND UPDATE CURRENT SUBTYPE-SPECIFIC RESEARCH PLANS AND PRIORITIES FOR EACH DISEASE, CURRENT SINCE 2019, AND HIGHLIGHT DEFICIENCIES IN EACH ON THE PATH TO CLINICAL TRIALS; - INCREASE COMMUNICATION AMONG RESEARCHERS OF RARE NEUROMUSCULAR DISEASE. THOUGH THESE DISEASES ARE DISTINCT FROM A HISTOLOGICAL AND GENETIC STANDPOINT, MANY TREATMENT MODALITIES AND INTERVENTIONS WILL BE SIMILAR IN NATURE. INFORMATION-SHARING IS KEY; - DISCUSS RESEARCH AND OPPORTUNITIES FOR SCIENTIFIC ADVANCEMENT AROUND CARDIAC AND PULMONARY FUNCTION, TWO SYSTEMS THAT HAVE THE GREATEST IMPACT ON HEALTH AND QUALITY OF LIFE FOR THE CONGENITAL MUSCLE DISEASE COMMUNITY; - CREATE, SHAPE, AND REFINE RESEARCH PROJECTS AND PLANS WITH CLEAR PATIENT INPUT ON NEED AND DESIGN. DISCUSSIONS WITH AFFECTED INDIVIDUALS AND CLINICIANS WILL HELP ENSURE THAT RESEARCH IS RESPONSIVE TO THE COMMUNITY'S NEEDS. WITH CURE CMD, AFBS, AND TEAM TITIN ALL WORKING WITH RESEARCHERS AND INDUSTRY TO SPEED TOWARD CLINICAL TRIALS, THESE COMMUNITIES ARE PRIMED FOR THE NEXT COLLABORATIVE MEETING. | $15K | FY2022 | Jul 2022 – Jun 2023 |
| Department of Health and Human Services | 2019 CONGENITAL MUSCLE DISEASE SCIENTIFIC SYMPOSIUM | $15K | FY2019 | Jul 2019 – Jun 2020 |
Department of Health and Human Services
$15K
2022 CONGENITAL MUSCLE DISEASE SCIENTIFIC SYMPOSIUM - CURE CMD (CURE CONGENITAL MUSCULAR DYSTROPHY) SEEKS SUPPORT FROM THE NATIONAL INSTITUTES OF HEALTH TO COLLABORATE WITH ALIGNED PATIENT ADVOCACY ORGANIZATIONS A FOUNDATION BUILDING STRENGTH (AFBS, FOCUSED ON NEMALINE MYOPATHY OR NM) AND TEAM TITIN (FOCUSED ON TITINOPATHY OR TTN) FOR THE 2022 CONGENITAL MUSCLE DISEASE SCIENTIFIC SYMPOSIUM, TO BE HELD JUNE 30 - JULY 3, 2022. WITH SIGNIFICANT OVERLAP IN SYMPTOMATOLOGY, CARE MANAGEMENT, AND RESEARCH COMMUNITIES, REPRESENTATIVES FROM EACH ORGANIZATION BELIEVE ATTENDEES WILL BENEFIT SIGNIFICANTLY FROM INFORMATION EXCHANGE AND COLLABORATION. THE ULTIMATE AIM OF THE MEETING IS TO ACCELERATE PROGRESS TOWARD CLINICAL TRIALS, TREATMENTS, AND EVENTUALLY, A CURE FOR CONGENITAL MUSCLE DISORDERS. THE 2022 EVENT WOULD BE THE SECOND MEETING OF THIS TYPE, AND IN THE TWO YEARS SINCE THE MEETING, MULTIPLE ADVANCEMENTS HAVE BEEN MADE FOR EACH OF THE THREE CONDITIONS REPRESENTED AT THE CONFERENCE. KEY OBJECTIVES ARE TO: - INTRODUCE NEW CONGENITAL MUSCLE DISEASE-FOCUSED RESEARCH PROJECTS. THE HOST PATIENT ADVOCACY GROUPS ARE FUNDING 13 NEW RESEARCH PROJECTS SINCE 2019’S IN-PERSON CONVENING; - DISCUSS NEXT STEPS FOR CREATING INNOVATIVE PLATFORMS LIKE THE NCATS-LED PLATFORM VECTOR GENE THERAPY (PAVE-GT), TAKING ADVANTAGE OF COMMON MUTATION CLASSES AND PATHOPHYSIOLOGICAL PATHWAYS ACROSS CMD SUBTYPES; - ASSESS AND UPDATE CURRENT SUBTYPE-SPECIFIC RESEARCH PLANS AND PRIORITIES FOR EACH DISEASE, CURRENT SINCE 2019, AND HIGHLIGHT DEFICIENCIES IN EACH ON THE PATH TO CLINICAL TRIALS; - INCREASE COMMUNICATION AMONG RESEARCHERS OF RARE NEUROMUSCULAR DISEASE. THOUGH THESE DISEASES ARE DISTINCT FROM A HISTOLOGICAL AND GENETIC STANDPOINT, MANY TREATMENT MODALITIES AND INTERVENTIONS WILL BE SIMILAR IN NATURE. INFORMATION-SHARING IS KEY; - DISCUSS RESEARCH AND OPPORTUNITIES FOR SCIENTIFIC ADVANCEMENT AROUND CARDIAC AND PULMONARY FUNCTION, TWO SYSTEMS THAT HAVE THE GREATEST IMPACT ON HEALTH AND QUALITY OF LIFE FOR THE CONGENITAL MUSCLE DISEASE COMMUNITY; - CREATE, SHAPE, AND REFINE RESEARCH PROJECTS AND PLANS WITH CLEAR PATIENT INPUT ON NEED AND DESIGN. DISCUSSIONS WITH AFFECTED INDIVIDUALS AND CLINICIANS WILL HELP ENSURE THAT RESEARCH IS RESPONSIVE TO THE COMMUNITY'S NEEDS. WITH CURE CMD, AFBS, AND TEAM TITIN ALL WORKING WITH RESEARCHERS AND INDUSTRY TO SPEED TOWARD CLINICAL TRIALS, THESE COMMUNITIES ARE PRIMED FOR THE NEXT COLLABORATIVE MEETING.
Department of Health and Human Services
$15K
2019 CONGENITAL MUSCLE DISEASE SCIENTIFIC SYMPOSIUM
Source: Federal Audit Clearinghouse (fac.gov)
No federal single audit records found for this organization.
Single audits are required for entities expending $750,000+ in federal awards annually.
Source: IRS e-Filed Form 990
No officer or director compensation data available for this organization.
This data is sourced from IRS Form 990, Part VII. It may not be available if the organization files Form 990-N (e-Postcard) or has not yet been enriched.
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2023 | $579.3K | $559.9K | $611.3K | $546.1K | $239.9K |
| 2022 | $1.1M | $1.1M | $1.5M | $849K | $271.9K |
| 2021 | $587.5K | $561.4K | $594K | $883.2K | $710K |
| 2020 | $779.6K | $778.8K | $855.6K | $783.8K |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
| Tax Year | Form Type | Source | Documents |
|---|---|---|---|
| 2024 | 990 | IRS e-File | PDF not yet published by IRSView Filing → |
| 2023 | 990 | DataIRS e-File | PDF not yet published by IRSView Filing → |
| 2022 | 990 | DataIRS e-File |
Financial data: IRS Form 990 via ProPublica Nonprofit Explorer (Tax Year 2023)
Federal grants: USAspending.gov (live)
Organization info: IRS Business Master File · ProPublica Nonprofit Explorer
Tax-deductibility: IRS Publication 78
| $514K |
| 2019 | $605K | $611.6K | $536.7K | $673.6K | $590.1K |
| 2018 | $748.3K | $754.5K | $421.6K | $696.6K | $521.6K |
| 2017 | $742.3K | $745.4K | $634K | $270K | $166.6K |
| 2016 | $304.9K | $334.3K | $337.1K | $156.3K | $58.3K |
| 2015 | $294.8K | $282.5K | $614.3K | $246.6K | $97.3K |
| 2014 | $512K | $504.8K | $307.4K | $667.6K | $416.9K |
| 2013 | $486.5K | $412.6K | $651.3K | $642.4K | $215K |
| 2012 | $576.3K | $549.7K | $434.9K | $754.6K | $380.3K |
| 2011 | $444.2K | $442.8K | $289.3K | $479.5K | $239K |
| 2021 | 990 | Data |
| 2020 | 990 | Data | PDF not yet published by IRS |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |