Organizations Filed Purposes:
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 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.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| John Cavitt | DIRECTOR | 2 | $0 |
| Marylee Dilling Mohn | DIRECTOR | 2 | $0 |
| Barbara Sergent | TREASURER AND DIRECTOR | 12 | $0 |
| Kay J Mccrary | SECRETARY AND DIRECTOR | 15 | $0 |
| Renata Sarno | PRESIDENT AND DIRECTOR | 18 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202022319349301707_public.xml