CHOROIDEREMIA RESEARCH FOUNDATION INC

RESEARCH
1. Expand Number of Publicly Available iPsc Cell Lines
2. Develop Porcine Model
3. Create New/Better Mouse Model
4. Continue to Work with SAB and Research Partners to accelerate Gene Therapy, including non-viral based gene therapy options, Stem Cell Replacement Therapies, RNA therapies and other innovative treatments
5. Develop and Roll Out Eye Donor Program
6. Develop and Distribute Female Carrier Survey and Possible Study
7. Finalize Staging Document
8. Evaluate and Refine Research Grant Submission Process/Priorities
9. Launch Peter G. Boone Endowment Research Awards
10. Pursue Additional Collaborations with Allied Nonprofits to Encourage and Leverage Co-Funded Awards
11. Plan and Execute Scientific Symposia or other Scientific Networking Meetings

PUBLICATION & COMMUNICATION
1. Increase Awareness of CRF through Media Relations, Digital Platforms & Community Engagement
2. Enhance CRF Member Engagement
3. Initiate & Expand CHMer Identification Initiatives

FUNDRAISING
1. Create Planned Giving Society
2. Launch Major Gift Campaign
3. Build Peter G. Boone Endowment Fund
4. Build unrestricted annual revenue to $1MM within 5 years
5. Initiate Monthly Email and Snail Mail Lapsed Donor Appeal (LYBUNT- Last Year But Unfortunately Not This year)
6. Re-Initiate In-Person Team CHM and other Fundraising Events Post-Pandemic
7. Increase Sponsorships of Regional Meetings, International Conference and Scientific Symposia
8. Expand Online Merchandise Store
9. Create Monthly Giving Society

PATIENT ENGAGEMENT
1. Expand Patient and Family Education and Support Services and Online Programming
2. Increase CRF Membership
3. Expand CHM Registry Participants and Natural History Information Collected
4. Plan and Execute Regional Meetings
5. Plan and Execute 2022 Member Conference

ADVOCACY & GLOBAL REACH
1. Expand Global Presence in Rare Disease, Industry (pharma and biotech) and Academic Communities through launch and expansion of International Choroideremia Research Network
2. Work with International Partners to Build, Support and Promote CRF Mission
3. Advocate for CRF/Rare Disease by Participating, Leading and Presenting at International Medical Professional Conferences
4. Increase engagement with Retina International/RI CHM special interest group

GOVERNANCE AND MANAGEMENT
1. Hold In-Person Board of Directors Retreat in 2021
2. Increase Board Member Engagement and Activity
3. Increase Committee Member Engagement and Activity
4. Identify new CRF mailing address and establish patient engagement succession plan

Communication is ongoing with entities conducting clinical trials and preclinical research. CRF assists where needed to help encourage enrollment in studies, connect researchers with appropriate preclinical resources and provide funding for projects of interest. We continue to recruit new scientific advisory board members globally and are expanding outreach to multidisciplinary researchers publishing scientific papers. Regular meetings with scientists occur at professional and CRF meetings to facilitate information sharing and collaboration.

A new database has been purchased to automate and integrate transaction processing, communications, and constituent relationship management reducing manual effort and improving efficiency and accuracy.

The CRF historically has been, and continues to be, a Foundation primarily operated by volunteers. The Foundation has endeavored to keep costs and overhead low in an effort to maximize the percentage of donations provided directly to scientific research efforts. The growth of the CHM research platform, additional CRF initiatives, and the associated need for increased fundraising sparked evolution of that thinking. It has become more apparent to the Board of Directors that CRF needed to dedicate funds to its organizational structure to manage the ever-increasing technology-driven environment. As a virtual organization, a strong structure becomes increasingly important to keep its processes running efficiently and to stay competitive with other fundraising organizations.

In the past several years, CRF has begun to add paid staff positions to assist in the development and management of the organization. Starting initially with an Executive Director and Director of Operations, CRF expanded its team to include positions such as the Directors of Advocacy and Director of Patient Engagement in 2017.

CRF celebrated its 20th year of service in 2020. The organization currently has 18 board members, 12 Scientific Advisory Board Members, dozens of volunteers, and 7 staff, including one full time, and 6 part time employees.

Research – Early and ongoing investments and efforts are moving us closer to effective treatments for choroideremia (CHM). As of 2022, we have awarded approximately $5 million to support research on causes and potential treatments. The CRF-funded biobank created from CHM patient samples is being used by researchers and sponsors in the US, Europe, and Canada. CRF was responsible for supporting development one of the first CHM mouse models, and is currently supporting development of a porcine CHM model.

International Role – CRF’s mission is international in scope. We serve choroideremia patients worldwide; we convene and sponsor CHM research in many countries; we include international representatives on our Board of Directors; and we travel and partner to share our mission globally. The CRF website is Google translate enabled and basic education regarding CHM is provided on our YouTube channel in over one dozen languages.

Organizational growth – With our Strategic Plan, CRF’s Board has set the course to build organizational capacity, focusing on increased mission impact and longer-term sustainability. We’ve engaged additional staffing to further develop infrastructure and maximize the potential for reaching goals established in the Strategic Plan.