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Bcm Families Foundation

Bcm Families Foundation

Jupiter, FL 33458
Tax ID47-1327738

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About this organization

Revenue

$101,679

Expenses

$104,216

Website

blueconemonochromacy.org

Mission

TO PROVIDE FINANCIAL SUPPORT FOR RESEARCH, PROJECTS, ACTIVITIES AND ORGANIZATIONS RELATED TO THE DIAGNOSIS, TREATMENT OR CURE OF BLUE CONE MONOCHROMACY ("BCM"). ALSO TO ESTABLISH NETWORKS AND SYNERGIES WITH OTHER GROUPS AND ORGANIZATIONS DEDICATED TO EYE AND/OR OTHER RARE DISEASE ISSUES AND TO EDUCATE THE GENERAL PUBLIC REGARDING BCM.

About

In 2019 the BCMFF concluded the creation of the International BCM Patient Registry, a strategic resource for our community of patients. The software house, Digital Video, delivered the web application at the end of Q2. The application has been online at www.BCMRegistry.org since September 1st and the BCMFF owns software license. The BCMFF has signed the annual maintenance contracts with Digital Video, with the European Data Protection Officer and with two Registry Managers. Currently in the registry there are 41 patients enrolled and validated and 30 patients on waiting list. The registry has received the approval of an Institutional Review Board, the Western IRB, and registry managers have followed ethics and privacy training courses. The written operating procedures of the registry have been implemented. The creation of the registry in the first part of 2019 entailed a high legal expense for the design of the registry and the drafting of all informed consents and privacy notices in accordance with the privacy regulations of the USA, Canada and Europe. In 2019 BCMFF continued contacts with pharmaceutical companies for intravitreal AAV-based gene therapy (IVT). This strategic project also involved legal fees. At the end of 2019 BCMFF entered into a confidential agreement with undisclosed participants in pursuit of an IVT.

Interesting data from their 2020 990 filing

The non-profit's aim, as indicated in the filing, is “To provide financial support for research, projects, activities and organizations related to the diagnosis, treatment or cure of blue cone monochromacy ("bcm"). also to establish networks and synergies with other groups and organizations dedicated to eye and/or other rare disease issues and to educate the general public regarding bcm.”.

When referring to its functions, they were specified as: “To provide financial support for research, projects, activities and organizations related to the diagnosis, treatment or cure of blue cone monochromacy ("bcm"). also to establish networks and synergies with other groups and organizations dedicated to eye and/or other rare disease issues and to educate the general public regarding bcm.”.

  • The non-profit has reported their operating state as FL, as required by law.
  • As stated in the filing, the non-profit's address in 2020 was PO BOX 7711, JUPITER, FL, 33468.
  • The non-profit's form reports a total of 0 employees as of 2020.
  • The non-profit has outstanding loans as of 2020.
  • Does not operate a hospital.
  • Does not operate a school.
  • Does not collect art.
  • Does not provide credit counseling.
  • Has foreign activities.
  • Is not a donor-advised fund.
  • Is not a private foundation.
  • Expenses are less than $100,000.
  • Revenue is between $100,000 and $250,000.
  • Revenue less expenses is -$2,537.
  • The remuneration of the CEO of the organization is not determined through an impartial review and approval process.
  • The organization elects its board members.
  • The organization has a written policy that describes how long it will retain documents.
  • The organization has 1 independent voting members.
  • The organization was formed in 2014.
  • The organization has a written policy that addresses conflicts of interest.
  • The organization is required to file Schedule B.
  • The organization is required to file Schedule O.
  • The organization pays $0 in salary, compensation, and benefits to its employees.
  • The organization pays $0 in fundraising expenses.
  • The organization provides Form 990 to its governing body.
  • The organization has minutes of its meetings.
  • The organization has a written whistleblower policy.

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