Biopontis Alliance Rare Disease Foundation Inc

Nonprofit profile at a glance

EIN
464764835
IRS 990 coverage
2015–2019
Forms available
Form 990 2019, Form 990-EZ 2019
Location
Raleigh, NC, USA
Phone
9196240841
Rating
54
Verdict
MIXED
Rating confidence
Moderate
Sector
Specifically Named Diseases

Official website

Reported finances

Revenue
$94,725
Expenses
$96,516
Assets
$19,562
Liabilities
$18,329

Source: IRS Form 990. Selected filing: tax year 2019. Amounts in USD.

Leadership & pay

8 people listed

Highest reported compensation

  • GILBERT CHIP CARNATHAN PHD (CHIEF SCIENT): $36,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2019. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The biopontis alliance rare disease foundation is a nonprofit corporation that brings together rare disease patient advocacy organizations, academic research centers, contract research companies, and the biomedical industry to translate research into potential treatments by focusing on the earliest stages of product development.

What it reported doing in 2019

Alliances and partnerships -- over 2019, the biopontis alliance organization has mainly worked on the realization of the promise of our first strategic partnership, which is the project with vib (flemish institute for biotechnology, belgium) and the university of antwerp, belgium on a clinical variant of the peripheral neuropathy charcot-marie- tooth disease. Together with our partners, we have worked on the identification of compounds from a large compound bank, owned by our partners, through assay development and high-throughput screening techniques. That work led to several 'hits', in other words, several compounds that may, after further validation and optimization, potentially be used for the development of a therapy. This positive development not only validates the overall approach taken by the biopontis alliance, but also provides a promising platform for further work towards a potential therapy for the indicated rare disease. We also worked with our partners on the definition of the next steps needed towards therapy development. In addition, we have worked on furthering our project with mass general hospital in boston, ma, but unfortunately, we have not been able to find the necessary funding to continue this project. Furthermore, we have worked on the due diligence of several promising candidates for new projects with candidate partners in the USA and in europe, including for diseases such as alternating hemiplegia, and ataxia's. Finally, we have continued to promote the tools we have developed to integrate patients' voices into the drug discovery/development process for rare diseases through active partnership with other rare disease non-profit organizations.

Operating model

Revenue model
Affiliate-supported. 96% of the money available for current operations came from contributions from related organizations.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

MIXED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 44
  • Transparency & Controls: 60
  • Accountability: 74
  • Sustainability: 30
  • Growth: 40

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 38.6%; rating input score 39
  • Program expense ratio: 37.8%; rating input score 38
  • Fundraising efficiency: $104.71 raised per $1 spent on fundraising; rating input score 90; 90th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 62nd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Scored; rating input score 0
  • Grant itemization coverage: Scored; rating input score 0
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Yes; rating input score 100

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 3 of 8 controls in place; rating input score 38
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: -1.9%; rating input score 54; 54th percentile among comparable filings
  • Total-asset coverage ratio: 0.2; rating input score 10; 10th percentile among comparable filings
  • Liabilities to assets ratio: 0.94; rating input score 7; 7th percentile among comparable filings
  • Officer compensation ratio: 37.3%; rating input score 9; 9th percentile among comparable filings

Growth

  • Program expense growth: -14.4% per year; rating input score 0; 27th percentile among comparable filings
  • Revenue growth: 1.4% per year; rating input score 100; 68th percentile among comparable filings
  • Asset growth: -22.5% per year; rating input score 0; 8th percentile among comparable filings

Details

  • Where the money goes: 38.6% of revenue deployed · 37.8% of spending went to programs
  • Governance: 7 of 7 board members independent · 3 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $37K in reported program spending
  • Leadership: top reported pay $36K · 8 people listed
  • Consistency: 21 of 21 current checks pass
  • Schedules: 5 filed schedules · includes major donors and foreign activity
  • Filing history: 5 filing years from 2015 to 2019
  • Contacts: How to reach this organization
  • Money network: 1 filed money-flow record
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Moderate — Financial Efficiency: Mission deployment rate scored 39/100.
  • Moderate — Financial Efficiency: Program expense ratio scored 38/100.
  • High — Transparency & Controls: Foreign activity oversight scored 0/100.
  • High — Transparency & Controls: Grant itemization coverage scored 0/100.
  • Moderate — Accountability: Governance controls: 4 of 7 not reported.
  • High — Growth: Program expense growth scored 0/100.
  • High — Sustainability: Total-asset coverage ratio scored 10/100.
  • Review — Sustainability: Operating margin scored 54/100.
  • High — Growth: Asset growth scored 0/100.
  • High — Sustainability: Liabilities to assets ratio scored 7/100.
  • High — Sustainability: Officer compensation ratio scored 9/100.