Tennessee Hemophilia & Bleeding Disorders

Transcription

1 Tennessee Hemophilia & Bleeding Disorders General Information Contact Information Nonprofit Address Tennessee Hemophilia & Bleeding Disorders 1819 Ward Drive Suite 102 Murfreesboro, TN Phone (615) Fax Web Site Web Site Facebook Facebook Twitter Twitter At A Glance Year of Incorporation 2000 Former Names Cumberland Chapter of National Hemophilia Foundation 1

2 Mission & Impact Statements Mission The Tennessee Hemophilia and Bleeding Disorders Foundation's mission is to enhance the lives of those affected by bleeding disorders. Background Initiated in 1969 by our founding families - Dr. van Eys, Hackets, Haleys, Whitehursts, Wards, Hadleys, Rowlands, Jarratts, Medleys. 1970: Charter filed with Natl. Hemophilia Fdtn; TN chapter run out of Whitehurst s home with volunteers. 1971: First Executive Director, Kathy Edry, hired; Freezers to hold cryoprecipitate developed; treatment at home possible. 1973: State Hemophilia Program started; Legislation passed with help from Senator Doug Henry to provide funding for Hemophilia Treatment Centers; provided consumers with hemophilia medical and dental care : HIV appears within community; first adult support group began : First information about the HIV epidemic evolves. 1986: Chapter lobbied & obtained comprehensive health insurance coverage (T-Chip) for pre-existing medical conditions which helped HTC increase services; Chapter began various support groups. 1987: Dr. van Eys Scholarship Initiated : HIV/AIDS counseling & risk reduction continued; Lobbied to prevent federal amendment TI FR 4785 to require reporting of names and results of HIV testing : Bobby Stanton hired as Executive Director (1992); Grant from Natl. Hemophilia Fdtn funded position for 4 years; Federal Legislation for Ryan White and Ricky Ray Supported; HIV/AIDS consumed community (1992); Multiple federal and NHF grants received; Lobbied for Support of B 951 anti-discrimination against people with infectious Diseases; Provided help with basic living needs, financial counseling, funeral expenses and Disability & Social Security Claims. 1995: Grant to Ryan White for full time Social Worker to assist HIV/AIDS community. 1996: Memphis Foundation Merged with Chapter. 1997: TN Hemophilia & Bleeding Disorder Fdtn established as 501 (c) 3 Statewide Foundation; Memphis Full Time Staff; Part-Time Staff for East Tennessee Outreach. Today the Tennessee Hemophilia & Bleeding Disorder Foundation has two full time employees and a 20 member Board of Directors. Collaboratively working with the Tennessee Hemophilia Treatment Centers, Pharmaceutical Companies and Home Health Care Services we provide direct education and services to the children and adults with bleeding disorders. Impact Three significant goals for the current year: 1) To identify new individuals with hemophilia or a bleeding disorder and provide services to them and their families, 2) To increase services to our current families and individuals with hemophilia or other bleeding disorders, and 3) To increase our individual and gift donor base. Three significant accomplishments for last year: 1) Worked on bringing in additional programming for our families in the bleeding disorders community, such as Dads in Action, Fall Festival, Women's Initiative, etc., 2) Provided services to 21 new families (a family may have one or more member with a bleeding disorder), and 3) Attendance of 68 children (ages 7-15) and 9 Leaders in Training (ages 16-17) at Camp Freedom. New campers this year totaled 19 and 2 LIT's were new to camp as well. Camp is a place where children with a bleeding disorder can be with others who also have a bleeding disorder. It is at Camp Freedom that campers learn to "stick" themselves to infuse their medication to put them on the path to self-sufficiency with their bleeding disorders. Service Categories Primary Organization Category Health Care / Patient & Family Support Areas of Service Areas Served TN The oldest not for profit serving the bleeding disorders community in the State of Tennessee 2

3 CEO Statement Hemophilia and related bleeding disorders are genetic in origin, however, one in three diagnosed cases results from a spontaneous mutation. Hemophilia affects approximately 20,000 Americans. Because there is no cure, these people require lifelong treatment. Treatment can cost upwards of $150,000 to $300,000 annually. These costs increase if HIV/AIDS or hepatitis must also be treated. One of the major complications of hemophilia is joint damage. People with hemophilia are confronted by physical, emotional, and psychological challenges. How well they meet these challenges depends on a number of things including the severity of the illness, the quality of medical care, the ability to pay for treatment, and the nature of relationships with family and friends. The Tennessee Hemophilia & Bleeding Disorders Foundation is the only non-profit organization in our state that targets assistance and support to this population. 3

4 Programs Programs Camp Freedom Description Camp Freedom is a week-long residential summer camp for children ages Camp offers instruction about the children's bleeding disorders and how to self-infuse, peer support, fun, and physical fitness for young patients. Budget Category Health Care, General/Other Patient & Family Support Population Served Children Only (5-14 years),, Blood Brotherhood Program Description The Blood Brotherhood Program is for men ages 25 and up. Theobjectivesof the Blood Brotherhood program are as follows: Social Support- Increase participation in bleeding disorder-related activities, communication with peers, and coping skills. Optimize Health Care Participants will be encouraged to take advantage of care offered through a Hemophilia Treatment Center. Physical Health Increase the understanding of how physical activity improves health and prevents disease and complications associated with bleeding disorders and aging. Population Served,, The Summit Description The Summit is an exciting opportunity to learn leadership and communication skills. Programs incorporate games, individual and group activities, and self-reflection exercises to encourage the development of leadership skills and to also encourage planning for the future. The Summit is for youth and young adults ages and Population Served,, Women's Initiative Description The Women s Initiative is an outlet for women and girls with bleeding disorders and women affected by a bleeding disorder (ie: wives, mothers).our Mission: To unite and support women and girls affected by von Willebrand s Disease and other bleeding disorders through informational programs, advocacy, and social events. Population Served,, 4

5 Governance Board Chair Board Chair Mr. Chris Cassada Term Dec 2016 to Dec Board Members Name Affiliation Status Mr. Robby Bond Mr. Aaron Braaten Mr. Chris Cassada Community Volunteer Mr. Andrew Covington Starstruck Entertainment Mr. Sam Doughty Renaissance Hotel Mr. Wade Fulton Ms. Mavis Harrop Community Volunteer Ms. Ashley Jones Mr. Allen Martin Ms. Amanda Mitchell Fresh Point Mr. Ronnie Nelson Memphis Light, Gas & Water Mrs. Megan Overby Community Volunteer Dr. Stephen Raffanti MD Dr. Jan van Eys Vanderbilt University Medical Center Board Demographics - Ethnicity African American/Black 2 Asian American/Pacific Islander 0 Caucasian 12 Hispanic/Latino 0 Native American/American Indian 0 Other 0 Board Demographics - Gender Male 10 Female 4 Unspecified 0 Governance Board Term Lengths 3 5

6 Board Term Limits 2 Board Meeting Attendance % 72% Written Board Selection Criteria? Written Conflict of Interest Policy? Percentage Making Monetary Contributions 80% Percentage Making In-Kind Contributions 80% Constituency Includes Client Representation Number of Full Board Meetings Annually 6 Standing Committees Advisory Board Communications / Public Relations Development / Fund Raising Education Executive Finance Membership Nominating Program Marketing Human Resources / Personnel Risk Management Provisions Accident & Injury Coverage Automobile Insurance Directors & Officers Policy General Property Coverage Life Insurance Medical Health Insurance Special Event Liability 6

7 Management Executive Director/CEO Executive Director Term Start Apr Mr. Timothy Diffenderfer Experience Over 30 years of non-profit experience. Networking, team building, program development, and leadership development highlight his career. Led previous organization in successful national program model application. Former CEOs Name Term Ms. Amy Maddy July Nov 2016 Karen Rudzinski Apr July 2014 Staff Full Time Staff 1 Part Time Staff 0 Volunteers 50 Contractors 1 Retention Rate 100% Plans & Policies Does the organization have a documented Fundraising Plan? Under Development Does the organization have an approved Strategic Plan? Number of years Strategic Plan Considers 3 When was Strategic Plan adopted? Aug 2008 In case of a change in leadership, is a Management Succession plan in place? No Does the organization have a Policies and Procedures Plan? Does the organization have a Nondiscrimination Policy? Does the organization have a Whistle Blower Policy? 7

8 Does the organization have a Document Destruction Policy? No Affiliations Affiliation Center for Nonprofit Management Excellence Network Year 2004 Community Health Charities

9 Financials Fiscal Year Fiscal Year Start Jan Fiscal Year End Dec Projected Revenue $498, Projected Expenses $421, Endowment Value $0.00 Endowment Spending Percentage (if selected) 0% Detailed Financials Revenue and Expenses Total Revenue $528,762 $384,254 $343,165 Total Expenses $421,125 $382,232 $347,072 Revenue Sources Foundation and Corporation $0 $0 $0 Contributions Government Contributions $28,684 $18,683 $0 Federal $0 $0 $0 State $0 $0 $0 Local $0 $0 $0 Unspecified $28,684 $18,683 $0 Individual Contributions $346,174 $294,006 $187,413 Indirect Public Support $0 $0 $0 Earned Revenue $0 $0 $0 Investment Income, Net of Losses $9,815 ($3,951) $6,373 Membership Dues $0 $0 $15,425 Special Events $144,089 $75,516 $97,467 Revenue In-Kind $0 $0 $36,487 Other $0 $0 $0 9

10 Expense Allocation Program Expense $292,880 $306,082 $263,274 Administration Expense $62,699 $47,814 $51,591 Fundraising Expense $65,546 $28,336 $32,207 Payments to Affiliates -- $0 $0 Total Revenue/Total Expenses Program Expense/Total Expenses 70% 80% 76% Fundraising Expense/Contributed Revenue 13% 7% 11% Assets and Liabilities Total Assets $370,975 $258,069 $261,012 Current Assets $207,734 $118,097 $112,769 Long-Term Liabilities $0 $0 $0 Current Liabilities $7,570 $5,382 $10,347 Total Net Assets $363,405 $252,687 $250,665 Short Term Solvency Current Ratio: Current Assets/Current Liabilities Long Term Solvency Long-Term Liabilities/Total Assets 0% 0% 0% Top Funding Sources Top Funding Source & Dollar Amount Contributions, Gifts Contributions, Gifts Contributions, Gifts, and Grants $346,174 and Grants $294,006 and Grants $187,413 Second Highest Funding Source & Dollar Fundraising Events Fundraising Events Fundraising Events Amount $144,089 $75,516 $97,467 Third Highest Funding Source & Dollar Amount Government Grants $28,684 Government Grants $18,683 Noncash Contributions $36,487 Capital Campaign Is the organization currently conducting a Capital Campaign for an endowment or the purchase of a major asset? No Capital Campaign Goal $0.00 Capital Campaign Raised-to-Date Amount $0.00 as of 0 Capital Campaign Anticipated in Next 5 Years? No State Charitable Solicitations Permit TN Charitable Solicitations Registration - Expires June 2018 Registration No 0 GivingMatters.com Financial Comments Financial figures are taken from the 990 and audit. 990 prepared by Valerie Kemp Dreier, CPA. Audit conducted by H.A. Beasley & Co., PC. 10

11 Comments provided by Kathryn Bennett 10/12/17. Created Copyright 2018 The Community Foundation of Middle Tennessee 11