CHOROIDEREMIA RESEARCH FOUNDATION INC

Saving Sight is our Vision

aka CRF, CHM Research Foundation, Cure CHM   |   Springfield, MA   |  https://www.curechm.org/

Mission

To raise funds in support of scientific research leading to a treatment or cure of choroideremia, a hereditary retinal-degenerative disease that causes blindness; to educate people affected by the disease; and to inform the public.

Ruling year info

2001

Executive Director

Mrs. Kathi Wagner

Main address

23 E Brundreth St

Springfield, MA 01109 USA

Show more contact info

EIN

04-3511754

NTEE code info

Eye Diseases, Blindness and Vision Impairments (G41)

Fund Raising and/or Fund Distribution (H12)

Eye (H41)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Choroideremia is a rare, X-linked recessive form of hereditary retinal degeneration that affects roughly 1 in 50,000 males in addition to a small percentage of females. The disease causes a gradual loss of vision, starting with childhood night blindness, followed by peripheral vision loss and progressing to loss of central vision later in life. Progression continues throughout the individual's life, but both the rate of change and the degree of visual loss are variable among those affected, even within the same family. Choroideremia is caused by a loss-of-function mutation in the CHM gene which encodes Rab escort protein 1 (REP1), a protein involved in lipid modification of Rab proteins. While the complete mechanism of disease is not fully understood, the lack of a functional protein in the retina results in cell death and the gradual deterioration of the retinal pigment epithelium (RPE), photoreceptors and the choroid. Currently, there is no treatment or cure for choroideremia.

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?

Research

Fund scientific research to improve treatment and find a cure for choroideremia.

Population(s) Served
Academics

Patient, family and medical education programs including webinars, support programs, and conferences/symposia.

Population(s) Served
People with vision impairments
Caregivers
People with vision impairments
Caregivers
Families
Parents
People with diseases and illnesses

Where we work

Accreditations

NORD 2020

Charity Navigator 2020

Great Nonprofits 2020

Affiliations & memberships

Retina International 2020

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, People with vision impairments, Researchers

Related Program

Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total dollars received in contributions

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, People with vision impairments, Researchers

Related Program

Research

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Donations as reported on IRS Form 990; increased revenue on even years is related to biennial conference.

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, People with vision impairments

Related Program

Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of press releases developed and distributed

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, People with vision impairments, Researchers

Related Program

Research

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total number of conferences held

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, People with vision impairments

Related Program

Research

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Biennial conferences held in different US locations for approximately 300 attendees

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

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.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Patients and family members affected with choroideremia (CHM).

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Community meetings/Town halls, Suggestion box/email, phone/zoom calls,

  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Following the presentation of webinars and online chats, surveys were sent to attendees requesting suggestions for future program ideas. Several of the proposed ideas were selected and programs were presented on the topics.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Feedback allows us to improve the services we provide to our constituents. It has allowed us to improve the accessibility functionality of our online event registration forms and website as well.

  • Which of the following feedback practices does your organization routinely carry out?

    We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

CHOROIDEREMIA RESEARCH FOUNDATION INC
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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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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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CHOROIDEREMIA RESEARCH FOUNDATION INC

Board of directors
as of 07/21/2022
SOURCE: Self-reported by organization
Board chair

Neal Bench

Retired CPA

Term: 2021 - 2024

Neal Bench

Retired, CPA

Tara Cassidy-Driscoll

Owners, Cassidy Insurance

Brian Mayer

Technical Services Manager, Customer Care, Ace Hardware Corporation

Michael Laengsfeld

CEO bei DVBS

Jason McKinney

Independent Contractor - ESL Instruction

Michael Mullen

Senior Portfolio Director/Senior Vice President/Financial Advisor, Morgan Stanley

Craig Rowley

Workforce Management Analyst II, Wex Financial

Stephanie Sims, MD

Child and Adolescent Psychiatrist, Baptist Medical Center

John Trott

Retired, Global Marketing Leader, HIV and Respiratory, Johnson & Johnson

Tracey Pretorius

Executive, Consumer Trust Engineering Strategy, Google

John-Ross Rizzo MD

Vice Chair of Innovation & Equity, Endowed Associate Professor of Rehab Medicine, NYU Langone Health

Jon Salois

Vice President of Sales, Atlas Distributing Company

Robert Hillier

President, Choroideremia Research Foundation, Canada

Aurelie Harp

Founder, Womanity Project and Womanity Play

Rachel Oster

Realtor, ReMax

Brian Counter

Retired, Senior Research Analyst, Parkland College

Kayla Schiller

Senior Tax Manager, GE

Yamil Rosete-Rodriguez

Senior Software Engineer, MasterCard

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 9/4/2019

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data