2024-07-23T07:50:34-07:00 2023-12-31 593827844 Richlak Lawyer & Co 9140 Tyler Boulevard Mentor OH 44060 990 2023-01-01 471327738 BCM FAMILIES FOUNDATION BCMF 4408646256 PO BOX 7711 JUPITER FL 33468 RENATA SARNO PRESIDENT 4408646256 2024-07-15 true RENATA SARNO XXX-XX-XXXX true DALE E RICHLAK CPA P00541873 4402554400 2024-07-23 3 AAL1 IAL1 FAL1 2023 2023-04-26 12:10:37Z RENATA SARNO PO BOX 7711 JUPITER FL 33468 156105 false X WWW.BLUECONEMONOCHROMACY.ORG X 2014 FL 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. 1 1 0 35 0 0 170126 156105 0 0 0 170126 156105 291431 0 0 0 866 57866 45374 57866 336805 112260 -180700 186176 85687 15315 95670 170861 -9983 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. false false 329794 291431 156105 In 2023 the BCMFF worked in agreement with the Strategic Plan, in multiple directions-- Cure for BCM: After our biotech partner decided to stop the development of the BCM Gene Therapy in 2022, then in 2023 we decided to continue developments by financing some important parts by ourselves. In the meantime, the director John Cavitt resigned with the aim of implementing a fundraising program for the treatment, founding the BlueGen Therapy Foundation, with which we started a constructive dialogue. One of the most important projects for the BCMFF in 2023 was to finance the University of Pennsylvania, where doctors Artur Cideciyan and Tomas Aleman worked in 2023 and until June 2024 on the clinical protocol and outcome measures of the gene therapy. The initial project cost was $148,759 of which $99,172 paid in 2023. In 2024 University of Pennsylvania requested $35,000 more to end the project and to coordinate with the European clinical center of Tubingen. BCMFF agreed. In 2023 the BCMFF financed also the study of Dr. Wentao Deng at the West Virginia University to test some intravitreal vectors received from the University of California Berkeley. The cost of the WVU project is $130,888; in 2023 we paid $100,000. Moreover, we paid $2,000 to UCB to have exclusive right to evaluate for 1 year an intravitreal vectors we received. There are some legal expenses related to close and discuss agreements of all these projects. Diagnosis The BCMFF started a collaboration with the Institute of Molecular and Clinical Ophthalmology Basel (IOB), Basel, Switzerland. We financed the Opsin Miner project of Dr. Mathieu Quinodoz for $8,784. This project can improve DNA tests and can be implemented in labs that perform Next Generation Sequencing DNA Tests. Patient preparation for Clinical Trial: We maintained and developed the BCM Patient Registry, a strategic project for the clinical trial. We paid for annual cost for hosting (AWS); software maintenance Digital Video; Registry Manager Sara Cammarota; legal fees to the Data Protection Officer CMS; annual ethics review from WIRB. An increased number of patients, families and clinicians participating in the Registry has been experienced in 2023. Community building: A European families meeting was held on September 19, 2023 in Tubingen, hosted by the University of Tubingen and by the Germany Achromatopsia association. A national families meeting was held in Charlotte, NC, on April 29, 2023. There are costs related to these meetings, mainly for the Charlotte Meeting, including services for the children room, hotel room scholarships, printed materials, hotel rooms and travel reimbursement for scientists and hotel services for the conference, partially paid in advance in 2022. BCMFF Reputation: We maintained connections with other patient organizations and umbrella organizations, such as NORD, Eurordis, Orphanet, Fastercures, Foundation Fighting Blindness, Berkeley Forum for Collaborative Research , Italian Achromats Association. Directors participated in the FloRetina conference and in several roundtables and webinars of the Berkeley Forum. Fundraising: Thanks only to the work of volunteers, with no expenses, we organized the GivingTuesday Campaign and the the Monthly Donors campaign. 329794 true true false false false false false false false false false false false false false false false false false true true false false false false false false false false false false false false true false false false false false false false false false false false false false true 0 0 0 false false false false false false false false false false false false X 1 1 false false false false true true false true true false false true true true true true true false false false NY X BARBARA SERGENT 4408646256 PO BOX 7711 JUPITER FL 33468 X RENATA SARNO PRESIDENT AND DIRECTOR 18.00 X X 0 0 0 KAY J MCCRARY SECRETARY AND DIRECTOR 20.00 X X 0 0 0 BARBARA SERGENT TREASURER AND DIRECTOR 12.00 X X 0 0 0 MARYLEE DILLING MOHN DIRECTOR 2.00 X 0 0 0 JOHN CAVITT DIRECTOR 2.00 X 0 0 0 NED READE DIRECTOR 2.00 X 0 0 0 0 0 0 0 false false false 156105 156105 0 0 0 0 0 156105 0 0 0 291431 291431 8273 8273 0 0 5110 0 5110 0 178 0 0 178 1202 306 208 688 20015 20015 0 0 808 0 808 0 REGISTRY DATABASE 5855 5855 0 0 PROGRAM CONSULTANTS 1200 1200 0 0 POSTAGE AND DELIVERY 235 216 19 0 PROGRAM EXPENSES 2498 2498 0 0 336805 329794 6145 866 183527 82137 2649 3550 186176 85687 915 795 80475 14400 14400 15315 95670 X 170861 -9983 170861 -9983 186176 85687 -180700 -144 X false false false X 0 101679 47139 92429 170126 156105 567478 0 0 101679 47139 92429 170126 156105 567478 347141 220337 0 0 0 567478 0.38830 0.41250 X 0 0 0 Pt II Ln 17a ATTRACTION OF PUBLIC SUPPORT: Pt II Ln 17a THE FOUNDATION MAINTAINS A CONTINUOUS AND BONA FIDE PROGRAM FOR SOLICITING GIFTS, GRANTS AND CONTRIBUTIONS FROM INDIVIDUALS AND CHARITABLE ORGANIZATIONS INTERESTED IN FURTHERING WORK IN THE RESEARCH AREA OF THE ORGANIZATION. THE FOUNDATIONS FUND RAISING PROGRAM CONSISTS OF PERSONAL CONTACTS WITH POTENTIAL CONTRIBUTORS BY THE MEMBERS OF THE BOARD OF DIRECTORS OF THE FOUNDATION AND SUBMISSION OF PROPOSALS FOR FUNDING OF THE FOUNDATIONS RESEARCH ACTIVITIES. SOURCES OF SUPPORT: THE FOUNDATIONS PUBLIC SUPPORT IS DERIVED FROM A REPRESENTATIVE NUMBER OF PERSONS. THE INSTITUTE HAS RECEIVED GRANTS OR CONTRIBUTIONS FROM A DIVERSE NUMBER OF DONORS. REPRESENTATIVE GOVERNING BODY: THE BOARD OF DIRECTORS OF THE FOUNDATION REPRESENTS THE BROAD INTERESTS OF THE PUBLIC. IT IS COMPRISED OF PERSONS HAVING SPECIAL EXPERTISE IN THE PARTICULAR FIELD IN WHICH THE FOUNDATION IS OPERATING AND COMMUNITY LEADERS REPRESENTING A BROAD CROSS-SECTION OF THE COMMUNITY, INCLUDING EDUCATORS AND CIVIC LEADERS. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Europe 0 1 FUNDRAISING 0 0 1 0 1 0 0 false false false false false false Pt I Line 3 Col (F) The Foundation receives contributions from Europe and Pt I Line 3 Col (F) no expenses are related to procuring those donations. RENATA SARNO PRESIDENT PAID INVOICE ON BEHA X 14400 14400 false false false 14400 Pt VI, Line 6 THE FOUNDATION IS ORGANIZED UNDER ITS BYLAWS TO HAVE MEMBERS. Pt VI, Line 7a THE VOTING MEMBERS MAY APPOINT MEMBERS TO THE GOVERNING BODY. Pt VI, Line 12c THE BOARD REVIEWS AND MONITORS COMPLIANCE REGARDING CONFLICTS OF INTEREST AS IT RELATES TO THE FOUNDATION. Pt VI, Line 11b THE MEMBERS REVIEW AND APPROVE THE FORM 990 BEFORE FILING. Pt VI, Line 19 THE FOUNDATION PROVIDES COPIES OF POLICIES UPON REQUEST.