GOLD2022

Macular Degeneration Association

aka Macular Degeneration Association   |   Sarasota, FL   |  www.maculardegenerationassociation.org

Mission

The mission of Macular Degeneration Association (MDA)  is to find a cure for macular degeneration through funding research, while providing education and services that will improve the quality of life TODAY, TOMORROW and in the FUTURE for patients with macular degeneration. While providing education, preventable measures and helpful tips to their caregivers and families.

Ruling year info

2010

Principal Officer

Mr. Lawrence S Hoffheimer

Main address

5969 Cattleridge Blvd Ste 100

Sarasota, FL 34232 USA

Show more contact info

EIN

27-3025707

NTEE code info

Fund Raising and/or Fund Distribution (B12)

Alliance/Advocacy Organizations (E01)

Eye Diseases, Blindness and Vision Impairments (G41)

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

Macular degeneration is increasing every year- it has reached epidemic portions- there aren't enough programs to educate those that are suffering with the disease. We need to produce more educational programs and materials to help manage this disease. More research is needed. New research needed for dry macular degeneration.

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?

Matters of Vision!

These programs are designed to bring specialists, patients, caregivers, and the general public together. Participants are able to communicate with the specialists and each other to have a better understanding of their disease. The Macular Degeneration Association is hosting 15 free programs nationally and 6 Virtual programs reaching 150+ at each of these programs.

Population(s) Served
Seniors
People with disabilities

Macular patients and caregivers and the medical community are given free and easy access to the latest information on research, education, and events. Macular Degeneration Association has a very progressive website www.macularhope.org  On this site you will find video's of past programs, patient testimonials, educational articles. The Macular Degeneration Association's website has an international reach, visited by professionals in the field, nurses, researchers and visually impaired persons from around the world.

Population(s) Served
Seniors
People with disabilities

Where we work

Awards

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.

Our goals are to bring awareness about macular degeneration to the forefront. With the information about risk factors, research and treatments that the experts in the field bring to all the programs, the patient, family and caregiver will have a better understanding of their disease. With the better understanding they are equipped to make better treatment choices. Each year we plan newer programs designed to meet the needs of those that have been diagnosed with age-related macular degeneration. By increasing awareness and fund raising efforts to grow current and future programs to better serve the macular degeneration community. Find a Cure for age-related macular degeneration through research .

1. Community awareness by means of onsite educational programs and programs held in independent living facilities. We are currently working on PBS Spotlights.

2. Work with Low Vision specialists, Retina specialists, Optometrists, Occupational therapists to provide the most information to the patient and research programs.

3. Nutrition is essential in helping control this disease- we will have nutritionists at some of the meetings.

Educational programs to discuss the cause, preventative measures, new treatments and research for those with age-related macular degeneration. The topics will include Low vision, Nutrition, Research and device that can help those that have been diagnosed with this disease live a fuller life. These programs will be scheduled Nationwide.

Creating macular degeneration and low vision awareness in the community.

Developing a strategy for research programs with renowned Low Vision Specialist , low vision equipment specialists and case workers.

We will have onsite the medical professional necessary to guide and validate the research process and procedures.

Accomplishments:
1. Provide funds for the awareness programs onsite and in Independent Living facilities for the purpose of providing the necessary information to give the patients of this disease a better outcomes.
2. Provide ongoing empowerment, educational programs lead by noted experts in the field for macular degeneration patients, caregivers and the community.
3. Provide ongoing and updated sophisticated website and free video webcasts to better serve the Macular community locally, nationally and on an international level.

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?

    We serve senior citizens, their family members, and their caregivers. After our programs they are given an evaluation form that they fill out.

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

    Paper surveys, Community meetings/Town halls,

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

    To make fundamental changes to our programs and/or operations, 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?

    When we receive the evaluation forms we read them and incorporate changes to the programs & ideas that our participants suggest or would like to know about.

  • With whom is the organization sharing feedback?

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

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

    People like to let us know how we are doing. They also like to suggest changes or things that they would like more information on.

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

    We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

Macular Degeneration Association
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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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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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Macular Degeneration Association

Board of directors
as of 09/06/2022
SOURCE: Self-reported by organization
Board chair

Mr. Lawrence Hoffheimer

Macular Degeneration Association

Term: 2010 - 2045

Lawrence Hoffheimer

Chairman

Donna Auger

Director

Amy Carroll

Secretary-Treasurer

Linda Patterson

Chief Financial Officer

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? Not applicable
  • 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 9/6/2022

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
Male
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 09/06/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We disaggregate data by demographics, including race, in every policy and program measured.
Policies and processes
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.