BCM FAMILIES FOUNDATION

Jupiter, FL   |  http://www.bcmfamilies.org/

Mission

To eradicate Blue Cone Monochromacy (BCM),

to provide financial support for research, projects, activities and organizations related to the diagnosis, treatment and/or cure of Blue Cone Monochromacy ("BCM"),

to establish networks and synergies with other groups and organizations dedicated to eye and/or other rare disease issues,

to make support and resources available to BCM patients and their involved families, and

to educate the general public regarding BCM.

Ruling year info

2014

Principal Officer

Renata Sarno

Main address

PO Box 7711

Jupiter, FL 33468 USA

Show more contact info

EIN

47-1327738

NTEE code info

Eye Diseases, Blindness and Vision Impairments (G41)

Fund Raising and/or Fund Distribution (H12)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

To eradicate our families' rare genetic disease Blue Cone Monochromacy, sparing sons in future generations of our families from the disabilities that BCM symptoms cause. Our tasks involve the following challenges: Identifying & gaining support from geneticists & retina reseachers expert in rare genetic retinal disorders, especially Blue Cone Monochromacy; Developing an ongoing Scientific Advisory Board whose experience & expert advice guides our path to cure; Contacting & engaging with biotechs who develop new treatments for rare diseases/retinal diseases & developing a relationship with these to result in our disease being chosen for the biotech to carry a cure through clinical trials to available markets for treatment & cure of BCM; Locating as many BCM men & BCM families as possible, using a website & medical education leading to referrals; Educating BCM men & their families about current medical advancements leading to cure, plus informed consent; Developing a BCM Registry...

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

BCM Patient Registry

Prominent experts in genetics and ophthalmology, at the University of Tubingen in Germany, are in relationship with BCMFF and have developed, continually update, and maintain a Patient Registry of persons shown by genetic testing to have Blue Cone Monochromacy.

Population(s) Served

A BCM Patients & Families support network website was launched in 2005. It is continually updated, maintained and expanded by BCM Families founder Dr. Renata Sarno, with assistance from member volunteers.

Population(s) Served

BCM Families Foundation will raise funds to support research that leads to BCM cure.

Population(s) Served

Through a website, conferences, webinars, pertinent handouts, brochures, speeches, attendance and participation at professional and support agency events, BCMFF intentionally seeks to improve knowledge regarding our rare disease. This is primarily accomplished via member volunteers.

Population(s) Served

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

To eradicate BCM by supporting effective treatments for cure to become available for the identified mutations that result in BCM

Studying the relevant research. Attending these researchers' professional meetings & developing relationships with them. Using their advice, experience & expertise both informally & through a Scientific Advisory Board. Funding selected research projects that advance our goal. Funding a Postdoctoral Assistantship at a major retinal research center. Attending meetings of other rare retinal diseases to network & learn what worked well for them. Actively affiliating with NORD, the umbrella organization supporting cures for rare disorders. Connecting with other BCM families via the Internet through a superb BCM website. Building community among BCM families through large BCM Meetings & Workshops featuring expert speakers & through informative regular newsletters. Working together as families on Rare Disease Day, lobbying, "Tell Our Stories" projects, #GivingTuesday fundraising for BCM. Meeting with Directors of Biotechs through introductions via our Scientific Advisory Board. Etc.

We have accomplished, or are far along in the process of accomplishing, every item I listed above. We are extremely fortunate to have several extremely generous "Angel donors" who have BCM in their family & who urgently want cure. We are fortunate to have, as BCM Families Foundation members & participants, some brilliant people with expertise in areas that help us advance. We seek best-possible advice before making decisions. Our Scientific Advisory Board members are great, reaching out to us when each sees something we should know or pursue. We are blessed with highly motivated mission-minded energetic volunteers committed to reaching BCM cure for the sake of their future generations. We are at the right point in history to achieve our goal, thanks to current advances in genetics, ophthalmology, & medical equipment such as CRISPR.

All of the above have been successfully accomplished or are concretely already in the process of advancing toward accomplishment with amazing progress. Specifically, we have an excellent BCM website, a regular newsletter, and major BCM Conferences in Atlanta, GA USA (August 2017) and Venice, Italy (October 2018), over 300 participating BCM families, BCM community projects such as Rare Disease Day participation, a "Telling Our BCM Stories" project & successful #GivingTuesday fundraising together. We have achieved an active Scientific Advisory Board who not only advises us but also actively opens doors for us, very productive relationships with two different biotechs, and are adding two additional Board of Directors members to qualify for membership in NORD for which we have applied. we fund genetic testing for BCM, a biobank for BCM at the University of Tuebingen, Postdoctoral fellowship there. plus BCM research at UPenn & U of FL., 2 BCM mice colonies, a BCM Patient Registry, etc.

The year 2019, has been a banner year! 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 the second quarter. The application has been online at www.BCMRegistry.org since September 1, 2019, and the BCMFF owns this 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 (August 2020) in the Registry there are 41 patients with this rare disease enrolled and validated, plus 30 additional BCM patients on a waiting list. The Registry has received the approval of an Institutional Review Board, the Western IRB. Registry managers have successfully completed ethics and privacy training courses. The written Operating Procedures of the Registry have been written, approved and 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. Also regarding expenses incurred in 2019, BCMFF continued contacts with pharmaceutical companies for intravitreal AAV-based gene therapy (IVT). This strategic project also involved legal fees. The end of 2019 yielded a much-desired achievement when BCMFF entered into a confidential agreement with undisclosed participants in pursuit of an intravitreal therapy (definitely preferable to sub retinal gene therapy injections) necessary for avoiding possible damage and perhaps blindness in fragile BCM eyes. The year 2019 and thus far the year 2020 have been a gratifying period of high achievement!

Financials

BCM FAMILIES FOUNDATION
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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BCM FAMILIES FOUNDATION

Board of directors
as of 8/13/2020
SOURCE: Self-reported by organization
Board chair

Renata Sarno

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No