BCM Families Foundation


PO Box 7711
Jupiter, FL 33458-7711
(803) 479-3605
https://registry.fastercures.org/organization-profiles/1005.html?user=10106


   

TRAIN Inventory Profile

Mission
Strategy/Approach
Research Portfolio
Financials
Key Accomplishments
Leadership
Ask Us About
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Mission

BCM Families Foundation (BCMFF) is a global community of patients organized as a nonprofit 501(c)3 organization with the mission to eradicate Blue Cone Monochromacy (BCM) by supporting the most promising biomedical and scientific research that will ultimately lead to a cure.

BCM is an orphan, rare disease of the retina affecting children since birth.

BCMFF is volunteer-driven and has been incorporated and is governed by patients and their families. BCMFF adopts an entrepreneurial approach to research projects and joins its efforts with universities, biotechnology companies and other patient organizations with the aim to accelerate the process toward the cure of BCM. BCMFF is interested in innovative ‘acceleration models’ where philanthropy funds are considered in the same way as venture capitalists investments.

Thanks to the ongoing support of founder Renata Sarno, 100 percent of public donations to BCMFF goes directly to research.

Strategy/Approach

BCMFF believes in sharing knowledge with individuals with BCM and their families, clinicians researchers and is building a strong and informed community.

BCMFF funded critical pioneering research on BCM gene therapy that was otherwise without a funding source. It is a part of a consortium-like collaboration with universities and a biotechnology company.

The aim of BCMFF is to create a patient registry for BCM, with a BCMFF Biobank that will collect DNA samples of families affected by BCM worldwide.

Research Portfolio

BCMFF invests in a harmonized framework of projects that can achieve the translation of gene therapy and can create strategic assets and continuity of the research, particularly the following:

Grant to Universities
BCMFF offers grants to universities that are given on the basis of projects that contain a timetable with measurable milestones to be achieved. Projects are submitted to BCMFF and analyzed by our Board of Directors with the help of the Scientific Advisory Board. Projects are selected in order to be integrated in a strategically designed plan.

Genetic Testing Services
BCMFF offers grants to research laboratories able to test DNA of BCM patients (all mutations), and able to participate in a DNA samples biobank project.

Support to Clinical Trials
BCMFF gives support to other members of the consortium collaboration to expedite a clinical trial for BCM.

Awards
Awards to young scientists at the beginning of their career who are working on BCM will be considered in order to support the next generation of scientists.

Financials

BCM Families Foundation is a 501(c)(3) non-profit organization.
The most recent financial information available is from 2015:
Year ending 12/31/15.

  • Revenue: $326,288
  • Assets: $75,834
  • Grants: $375,237
  • Gifts Received: #326,288
  • Total Expenditures: $37,608

Key Accomplishments

  • Provided critical funding to pre-clinical research toward the gene therapy of BCM.
  • Signed a collaboration agreement with a biotech company to develop an AAV-based gene therapy for BCM.
  • Supports the DNA screening of every BCM family in order to identify all the BCM causative mutations.
  • BCMFF has a silver medallion on Guide Star (awarded by the charity navigator) for its financial health, accountability and transparency.

Leadership

BCM Families Foundation is governed by a Board of Directors counseled by a Scientific Advisory Board (SAB). Our SAB is composed of scientists who have achieved good results regarding our pathology and who have demonstrated both an impressive track record, together with long-distance vision.

Ask Us About

  • Building research collaborations
  • Partnering with industry