Macular Degeneration Association

Transcription

1 Macular Degeneration Association SUMMARY 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. Contact Information Primary Address Alternate Address 5969 Cattleridge Blvd Ste 100 Sarasota, FL Cattleridge Blvd Suite # 100 Sarasota FL Phone Alternate Phone info@macularhope.org Website Facebook macularhope Twitter macularhope General Information nprofit Organization Does Business As (DBA) Macular Degeneration Association, Inc. Tax Exempt Status Macular Degeneration Association Public Supported Charity Incorporation Year 2010 State Charitable Solicitations Permit Aug

2 State Registration 0 2

3 BACKGROUND & NEEDS Impact Statement Accomplishments: 1. Provide ongoing empowerment through awareness, educational and support programs for patients of macular degeneration and their caregivers and the community. 2. Provides programs yearly for free. These programs cover research, preventative measures, new treatments, medications and low vision equipment demonstrations. 3. Educating patients, caregivers, and the general public. Bringing awareness of this insidious vision-robbing disease, preventive measures, coping strategies and treatments that are available. 4. Provide ongoing and updated sophisticated websites and free video's to better serve the macular community locally, nationally and on an international level. 5. We continue to receive evaluations from the participants of these programs "Thanking" us for hosting them. They feel that this kind of education is needed. Participants stated that after these programs they felt empowered and better equipped to make decisions pertaining to their eye disease, research that is being done, treatment options, nutritional aspects, low vision products available, all leading to a fuller life for them. Top Goals: 1. Increase awareness and fundraising efforts to sustain and grow current and future programs to better serve the macular community. 2. Educate healthcare providers regarding macular degeneration care management, cutting-edge procedures and the latest therapies available and adding personalized medicine. 3. Offer additional educational conferences and opportunities with renowned faculty to include noted experts in the field as well as provide funding for research into a cure for macular degeneration. Needs Statement 1. Research: Research in the field of dry macular degeneration is needed- there aren't any treatments for this type of macular degeneration. The money will help fund new treatments for dry macular degeneration. New medications that will continue to help stop the" leaking of blood" in the eye of those with wet macular degeneration by not only stopping the leakage but also stopping the growth of abnormal blood vessels. Our need is $ 50, Program Growth: Macular Degeneration Association offers over free programs locally and nationally each year. With $ 40, we would be able to extend our programs to other areas that are currently not reaching. We would be able to provide state of the art education by well-known doctors in the field of macular. These programs will provide empowerment to those affected by these devastating eye diseases that have the potential to rob their vision and lead to Blindness. 3. Educational Resources: The Macular Degeneration Association needs additional funds to help with our programs, education, and resources that are provided free to those that are affected by these diseases. $25, would provide more resources. 4. Educational Tools and Videos: $25, would be used to produce online videos for those that are homebound or are unable to attend a program. 3

4 Background Statement The Macular Degeneration Association was originally started by our Chairman of the Board Lawrence Hoffheimer; it was his vision to see that people that were diagnosed with macular degeneration learn about their disease. Options that were available through education. Mr. Hoffheimer started this organization in 2007 and from there it has served over 65,000 people through awareness programs both locally and nationally, educational resources and a robust website. Statement from the Board Chair We have held over 77 conferences since 2013 locally and nationally. Macular degeneration is reaching epidemic proportions. People are asking for more education on this disease and we are unable to provide it due to budget constraints. Of the 77 conferences that we have held we ask that the participants fill out an evaluation form. We have told that the programs are excellent and provide the education and information that they are looking for. We have a short fall of $25, Statement from the CEO/Executive Director It really warms my heart when participants at the programs come up to us and tell us how important these programs are. They state that they have learned more about their disease and now are able to handle their diagnosis. With the knowledge that they gained they state that they will be able to make better treatment decisions. Areas Served FL- Manatee FL- Charlotte FL- DeSoto FL- Hillsborough FL- Manatee FL-Pinellas FL- Sarasota National Macular Degeneration Association (MDA) serves the greater Sarasota area but appeals to residents of surrounding counties, states and internationally due to the unique awareness programs provided. We have held 13 awareness conferences in 2017-Ft. Lauderdale, Jacksonville, The Villages, Clearwater and, Sarasota, FL. Conferences are also being held nationally in Phoenix, AZ, Salt Lake City, UT, Tucson, AZ, Madison, WI, Sacramento, CA, Portland, OR, Austin, TX, Greenville, SC and Jackson, MI. Service Categories Primary Organization Type Secondary Organization Type Education Health Care 4

5 PROGRAMS Saving Your Sight! Description Held in Sarasota, FL this program is 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. In 2018 the Macular Degeneration Association is planning on hosting 24 free programs locally and nationally. Budget $30, Category Program Linked to Organizational Strategy Population Served Short Term Success Long Term Success Program Success Monitoring Program Success Examples Human Services, General/Other Services for Individuals with Disabilities Elderly and/or Disabled People/Families with of People with Disabilities At-Risk Populations Interaction with the specialists and each other. Support of each other in the discussions and their trials along their journey. Participants would walk away with knowledge about their disease, treatment options, research and tips on living with this disease, this way giving them more power over their choices and a more fulfilled life. We track success by various means: evaluation forms, surveys, personal interviews and testimonials, and physician evaluation of the programs. Caregivers and family members noted that they had a better understanding of the disease and how to help their loved ones cope with their vision impairment. On the evaluation forms, the participants stated that they came away from the program with a better understanding of their disease and were reassured that they could make difference for a better outcome. They loved the interaction between the speaker and the audience. One participant wrote "I thought I knew everything about macular degeneration and now my eyes were opened. Thank you" another wrote " everyone should participate in these educational programs you will learn a lot. Thank you" "It's great to interact with others going through the same things I am and hearing about their successes and tips that they shared" " There is a strong need of these programs and the information that is shared. Thank you." 5

6 Web Site Description 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 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. Budget $380, Category Program Linked to Organizational Strategy Population Served Short Term Success Long Term Success Program Success Monitoring Program Success Examples Human Services, General/Other Services for Individuals with Disabilities Elderly and/or Disabled People/Families with of People with Disabilities Poor,Economically Disadvantaged,Indigent Our short-term goal for our site is to increase knowledge of macular degeneration, inform on the latest research and provide programs to improve the quality of life for each individual, their families, and caregivers. We value our ability to provide education and information to those outside our area and internationally to improve their quality of life is an integral mission of the website. This information can help an individual whether inside or outside the USA improve their life by 40%. Our long-term success lies in the ability to reach those with macular degeneration along with their family members as this is a hereditary disease, caregivers, and the general public. As knowledge of our site increases the help that is provided for free to the many that so desperately are in need of this information will be available to them no matter where they live in the world. Due to the availability of this information, there has been a 75% behavior change in those suffering from some from macular degeneration and a noticeable change in their quality of life. We receive feedback from comments on our website, Facebook, Twitter and through the many s that we receive from the macular community and researchers and physicians. One researcher from Germany commented on the information that was provided on the latest research. Our patients commented on the Ask the Doctor section- " I asked the doctor a question and his answer was very helpful." The information about upcoming programs is appreciated " So glad you will be in my area. Can't wait to attend." "The information provided helps me deal with the loss of vision in a more manageable way and lets me know that I am not alone in my struggles." All I can say is "Thank you" Comments Program Comments by Organization These programs have been very successful. We have reached over 1000 people this year (2017). All the participants were looking for education about their disease, treatment information and ways to prevent their 6

7 disease from progressing. They had many questions and concerns that were answered by the specialist in the field of retina. These programs provided them with better knowledge and empowered them to take control of their eye health. 7

8 MANAGEMENT CEO/Executive Director CEO/Executive Director CEO Term Start Jan 2010 CEO Mr. Lawrence S Hoffheimer info@macularhope.org Experience Mr. Hoffheimer was a federal prosecutor with the United States Department of Justice and a practicing health care attorney in Washington, D.C. for thirty-three years. During the course of his career, he has represented numerous voluntary health agencies and healthcare delivery professionals. Mr. Hoffheimer was asked by the National Parkinson Foundation to serve as its Washington counsel where he became a leader in the lobbying effort to pass the Morris K. Udall Bill, which provided $100,000,000 for research into the cause and cure for Parkinson s disease. In 2007, Mr. Hoffheimer formed the Macular Degeneration Association. He continues his lifelong commitment to the Macular Degeneration community by playing an active role as Chairman of the Board for MDA and his continued effort to bring awareness to this devastating disease. Co-CEO/Executive Director Co-CEO/Executive Director Co-CEO Term Start Jan Mrs. Donna J Auger donna@macularhope.org Experience Donna has over 20 years experience in the optometric and opticianry fields. Donna worked with a well-known Retina specialist in St. Petersburg for 17 years. This is where her passion for educating the patients and caregivers about macular degeneration. Donna has worked hard to have top notch educational programs and filling the need of many people battling eye diseases. Senior Staff Donna Auger Executive Director Staff & Volunteer Statistics Full Time Staff 2 Part Time Staff 1 Staff Retention Rate % 100 Professional Development Contractors 0 Volunteers 0 Management Reports to Board CEO/Executive Director Formal Evaluation Senior Management Formal Evaluation nmanagement Formal Evaluation 8

9 Collaborations Loan from related entity Parkinson Research Foundation Comments Management Comments by Organization Macular degeneration has reached epidemic proportions funding for research, new programs and resources are in desperate need. We are continuing to work to find new ways of producing the funds that we are lacking. 9

10 GOVERNANCE Board Chair Board Chair Mr. Lawrence S Hoffheimer Company Affiliation Macular Degeneration Association Board Term Jan 2010 to Jan 2021 Board Chair info@macularhope.org Board Members Name Affiliation Status Mrs. Donna Jean Auger Director nvoting Mrs. Amy Carroll Secretary-Treasurer Voting Mr. Lawrence Samuel Hoffheimer Chairman Voting Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 3 Hispanic/Latino 0 Native American/American Indian 0 Other 0 0 Board Demographics - Gender Male 1 Female 2 t Specified 0 Governance Board Term Lengths 50 Board Term Limits 99 Board Orientation Number of Full Board Meetings Annually 8 Board Meeting Attendance % 95 Board Self-Evaluation Written Board Selection Criteria Percentage of Board Making Monetary Contributions 66 Percentage of Board Making In-Kind Contributions 33 10

11 Constituency Includes Client Representation 11

12 FINANCIALS Current Financial Info Fiscal Year Begins 2017 Fiscal Year Ends 2017 Projected Revenue $281, Projected Expenses $249, Total Projected Revenue includes "in-kind" contributions/ donations Endowment Value $0.00 Spending Policy Percentage 0 Tax Credits Capital Campaign In a Capital Campaign Campaign Goal 0 IRS Form 990s Macular Degeneration Association MDA MDA 990 Form 990 Audit/Financial Documents Audit Audit 2015 Audit 2014 Audit 2013 Macular Degeneration Association MDA 2012 Audit MDA 2011 Audit Solvency Short Term Solvency Fiscal Year Current Ratio: Current Assets/Current Liabilities Long Term Solvency 12

13 Fiscal Year Long-Term Liabilities/Total Assets 0% 0% 0% Historical Financial Review Revenue and Expenses Fiscal Year Total Revenue $1,166,471 $1,043,941 $1,154,603 Total Expenses $1,237,610 $959,005 $1,050,806 Revenue Sources Fiscal Year Foundation and Corporation $0 $0 $0 Contributions Government Contributions $0 $0 $0 Federal $0 $0 $0 State $0 $0 $0 Local $0 $0 $0 Unspecified $0 $0 $0 Individual Contributions $1,166,471 $1,043,941 $1,154,603 Indirect Public Support $0 $0 $0 Earned Revenue $0 $0 $0 Investment Income, Net of Losses $0 $0 $0 Membership Dues $0 $0 $0 Special Events $0 $0 $0 Revenue In-Kind $0 $5,500 $18,500 Other $0 $0 $0 Expense Allocation Fiscal Year Program Expense $806,893 $554,891 $547,237 Administration Expense $176,658 $136,071 $150,667 Fundraising Expense $254,059 $268,043 $352,902 Payments to Affiliates $0 $0 $0 Total Revenue/Total Expenses Program Expense/Total Expenses 65% 58% 52% Fundraising Expense/Contributed Revenue 22% 26% 31% Assets and Liabilities Fiscal Year Total Assets $313,173 $340,057 $251,214 Current Assets $312,475 $337,340 $245,430 Long-Term Liabilities $0 $0 $0 Current Liabilities $92,625 $48,370 $49,963 Total Net Assets $220,548 $291,687 $201,251 Top Funding Sources Fiscal Year Top Funding Source & Dollar Amount Contributions, gifts, grants $1,166,471 Contributions, gifts, grants $1,043,941 Contributions, gifts, grants $1,154,603 Second Highest Funding Source & Dollar 0 $0 0 $0 0 $0 Amount Third Highest Funding Source & Dollar Amount 0 $0 0 $0 0 $0 13

14 Comments Financial Comments by Organization Strategic planning/setting priorities Raising and securing money to accomplish our mission Increasing awareness of our organization and the value we bring to the communities and states that we serve Priorities have been set for research projects We are working with several groups to add more to each of our programs to give the participants more information to accomplish our part of our mission, education. Financial Comments by Foundation The financial information is taken from Federal Form 990 and audited financial statements. Tax returns and audited information reconcile. Contributions include both foundation and corporate support as they are not separately stated. 14

15 PLANS, POLICIES & LICENSES Plans Fundraising Plan Communication Plan Strategic Plan Strategic Plan Adopted Jan 2014 Years Strategic Plan Considers 15 Management Succession Plan Continuity of Operations Plan Policies Organizational Policies and Procedures Written Conflict of Interest Policy ndiscrimination Policy Directors and Officers Insurance Policy Whistle Blower Policy Document Destruction Policy Awards & Recognition Award/Recognition Organization Year Top-n-Profit 2014 Great n-profits 2014 Top-n-Profit 2015 Great n-profits 2015 Top-n-Profit 2016 Great n-profits 2016 Top- n-profit 2017 Great n- Profits 2017 Government Licenses Is your organization licensed by the Government? Planning & Policies Comments Planning & Policies Comments by Organization Planning & Policies Comments by Foundation Created Copyright