Bcm Families Foundation

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.

IN 2021, BCMFF CARRIED OUT THE FOLLOWING STRATEGIC INITIATIVES: 1) BCMFF WORKED WITH ITS BIOTECHNOLOGICAL PARTNER SUPPORTING THE THERAPY PROJECT AND PARTICIPATED IN PERIODIC MEETINGS OF THE JOINT STEERING COMMITTEE. A GRANT TO THE UNIVERSITY OF PENNSYLVANIA FOR $30,000 WAS MADE AS A PART OF A JOINT PROJECT WITH THE BIOTECHNOLOGICAL PARTNER, TO FIND, AS REQUESTED BY THE FDA, A COLOR TEST THAT CAN ASSESS IMPROVEMENTS AFTER GENE THERAPY. 2) BCMFF COMMENCED PLANNING A VIDEOGAME FOR THE DIAGNOSIS OF BCM WITH THE UNIVERSITY OF NORWAY. 3) BCM MAINTAINED AND DEVELOPED THE BCM PATIENT REGISTRY, A STRATEGIC PROJECT FOR CLINICAL TRIAL. BCMFF PAID FOR THE ANNUAL COST OF HOSTING (AWS), SOFTWARE MAINTENANCE DIGITAL VIDEO, REGISTRY MANAGERS, LEGAL FEES TO THE DATA PROTECTION OFFICER CMS, AND ANNUAL ETHICS REVIEW FROM WIRB. THIS INCREASED THE NUMBER OF PATIENTS, FAMILIES, AND CLINICIANS PARTICIPATING IN THE REGISTRY. 4) COMMUNITY EVENTS SUCH AS REGIONAL ZOOM MEETINGS TOOK PLACE VIRTUALLY WITH NO EXPENSES THROUGH THE WORK OF BCMFF DIRECTORS AND VOLUNTEERS. ADDITIONALLY, PREPARATION OF IN-PERSON 2022 FAMILIES MEETINGS STARTED AT THE END OF 2021. 5) BCMFF MAINTAINED CONNECTIONS WITH OTHER PATIENT ORGANIZATIONS AND UMBRELLA ORGANIZATIONS, SUCH AS NORD, EURORDIS, ORPHANET, RARE CONNECTS, FASTERCURES, FOUNDATION FIGHTING BLINDNESS, BERKELEY FORUM FOR COLLABORATIVE RESEARCH, ITALIAN ACHROMATS ASSOCIATION. ALSO, BCMFF DIRECTORS PARTICIPATED IN THE ARVO CONFERENCE AND IN SEVERAL ROUNDTABLES AND WEBINARS. 6) THANKS TO THE WORK OF OUR VOLUNTEERS, AND WITHOUT EXPENSES, BCMFF ORGANIZED THE GIVING TUESDAY CAMPAIGN AND THE MONTHLY DONORS CAMPAIGN.