Cystic Fibrosis Foundation

Transcription

1 Cystic Fibrosis Foundation General Information Contact Information Nonprofit Cystic Fibrosis Foundation Address 4538 Trousdale Drive Nashville, TN Phone (615) Fax Web Site Web Site Facebook Facebook Twitter Twitter At A Glance Year of Incorporation

2 Mission & Impact Statements Mission The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care. Background During a 1950s heat wave in NY, several babies with cf were brought into the emergency rooms for dehydration. A doctor named di Sant Agnese discovered that the sweat in the babies had abnormally high levels of sodium, chloride and potassium. This discovery did two things: 1. It helped establish the fact that the sweat glands were some how effected by cf thus paving the road for later research on a faulty sodium chloride channel and 2. Helped to establish a manner in which to diagnose patients with cf. In 1955, the Cystic Fibrosis Foundation was established by several CF parents to raise money to fund research to find a cure for cf patients. In the 1960s the CF sweat test was established and doctors discovered that steroids helped curb the inflammation in cf patient and prolong their lives. The most significant decade in CF research was probably the 1980s. In 1989, a miraculous occurrence happened scientist discovered the cf gene on chromosome 7. Finding the CF gene is momentous for a number of reasons. The discovery allows for the cloning of the CF gene and testing in animal models for possible cures. It enables doctors to experiment with gene therapy. A cf diagnosis can now be confirmed, and people can now be tested for carrier status of the cf gene. Most importantly, with the discovery of the gene, scientists discovered what many now consider the basic defect in cf the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) a pesky protein that causes the cell to close the door on sodium chloride refusing reentry to the cell and wreaking havoc on all exocrine system functions in the cf patient s body. The 1990s and the early 2000s were years of valuable research which led us to three drug approvals - Kalydeco (2012), Orkambi (2015), and Symdeko (2018) - which target this defective protein at the cellular level. These treatments give more than half of those with CF a control over the progression of their disease. Like insulin has done for diabetes, these drugs can do for those with CF who can take them immediately. The CF Foundation is committed to 100% of people with CF to have a true cure from their disease. It is anticipated that by 2020, 90-93% of those with CF could have a similar treatment to control the progression of their disease. We aren't finished though, as this is NOT a cure. In this decade we have introduced gene therapy, gene editing, stem cell research and more to hopefully lead us to the cure. The history of cf has taken us in a 67-year time frame from a nameless phenomenon to being able to clone the gene for research purposes. How far we have come! We owe a huge debt to the doctors, researchers, families and supporters like you that have gone ahead of us to make our goal of a cure a truly obtainable one! Impact Three most significant goals for the current year: 1. To make yearly budget of $1,346, To recruit 15 new corporate sponsors. 3. To recruit 45 new volunteers to the organization. Three most significant accomplishments of the past year: 1. Exceeded chapter special event net revenue budget for the year. 2. Implemented Tomorrow's Leaders young professional initiative. 3. Recruited and maintained 170 volunteers. 2

3 Needs 1. Fundraising Teams, family and/or corporate, are needed for our Great Stride walks. We have a total of 3 walks in the Middle Tennessee area. Please visit our website to locate our walk closest to you. 2. We are in need of sponsorships for our events, walks and galas. we have a new food tasting and concert event in the fall as well as a cycle and golf event. Please visit our website for further details. Other ways to donate, support, or volunteer In-kind donations for events, phone donations using credit cards, and mailing checks to chapter address. We are always in need of volunteers for our events. Please call to be added to our volunteer listing. Service Categories Primary Organization Category Diseases Disorders & Medical Disciplines / Birth Defects & Genetic Diseases Secondary Organization Category Civil Rights, Social Action, Advocacy / Disabled Persons' Rights Tertiary Organization Category Health Care / Health Support Areas of Service Areas Served TN - Davidson TN - Montgomery TN - Rutherford TN - Williamson TN - Lawrence TN - Coffee TN - Rutherford TN - Sumner We have two Care Centers in Davidson County - one adult care center and one for pediatrics. We also have an adult and pediatric care centers in Knoxville and Memphis, as well as a pediatric care center in Chattanooga. 3

4 Programs Programs Great Strides Description Tennessee chapter hosts walks in communities in and surrounding the Nashville area to help make "Great Strides" toward a cure for Cystic Fibrosis. Please visit our website to learn more about the dates and locations of upcoming walks. Budget Category Medical Research Birth Defects, Genetic Disorders & Developmental Disorders Research Population Served General Public/Unspecified,, 30 under 30 Description This honoree events brings young professionals together in support of Cystic Fibrosis Foundation. Budget Population Served Adults,, CF Golf Tournament Description Have a day off from work and spend it on the golf course!! Have a day in the sun, enjoy your friends all while raising research dollars in support of the Cystic Fibrosis Foundation. Budget Population Served General Public/Unspecified,, Cycle for Life Description Experience the beautiful and challenging roads of Williamson County, Tennessee while competing for Great Prizes or just enjoying the ride with great friends! Three different route options - 15, 30, and 65 mile routes. Population Served,, CEO Comments Please visit our website for more information about current dates, times, and locations for all of our programs. 4

5 Governance Board Chair Board Chair Mr. Scott Kelly Company Affiliation HCA Term Jan 2018 to Dec 2020 Board Members Name Affiliation Status Ms. Marissa Benchea Nashville Area Chamber of Commerce Voting Mr. John Burch Jr. My Office Products Voting Mrs. Natalie Church Community Volunteer Voting Ms. Anne Gobbell Community Volunteer Voting Mr. John Goodman Bob Parks Realty Voting Ms. Mary Beth Haltom Lewis King Kreig Waldrop Voting Mr. Del Hickman T.W.Frierson Contractor Voting Mr. Chris Lee Vanderbilt Medical Group Voting Mrs. Blake Leyers Community Volunteer Voting Mrs. Jeanne Marchetti Community Volunteer Voting Ms. Anne Elizabeth Mc Intosh sales rep Voting Mr. Brian C. O'Meara Regions Voting Mrs. Allison Reichenbach Form Fast Voting Mr. Tim Roberson Merrill Lynch Voting Mrs. Kira Roberts Community Volunteer Voting Mr. Greg Shaw Shaw & Jones Masonry Voting Dr. Andrew Sokolow Vanderbilt Children's Hospital Voting Mr. Ron Taylor Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 19 Hispanic/Latino 0 Native American/American Indian 0 Other 0 Board Demographics - Gender Male 9 Female 9 Unspecified 0 5

6 Governance Board Term Lengths 2 Board Term Limits 3 Board Meeting Attendance % 70% Written Board Selection Criteria? Written Conflict of Interest Policy? No Percentage Making Monetary Contributions 100% Percentage Making In-Kind Contributions 65% Constituency Includes Client Representation No Number of Full Board Meetings Annually 5 Standing Committees Advisory Board Development / Fund Raising Executive Finance Membership Nominating Risk Management Provisions Accident & Injury Coverage Directors & Officers Policy Disability Insurance Improper Sexual Conduct/Sexual Abuse Life Insurance Medical Health Insurance Special Event Liability Workers Compensation & Employers' Liability CEO Comments. 6

7 Management Executive Director/CEO Executive Director Mrs. Leigh A. Ellington Term Start June Co-CEO Co-CEO Mrs. Pamela Ogg Term Start Jan Staff Full Time Staff 5 Part Time Staff 0 Volunteers 500 Contractors 0 Retention Rate 100% Plans & Policies Does the organization have a documented Fundraising Plan? Does the organization have an approved Strategic Plan? Number of years Strategic Plan Considers 3 When was Strategic Plan adopted? Jan 2018 In case of a change in leadership, is a Management Succession plan in place? Does the organization have a Policies and Procedures Plan? Does the organization have a Nondiscrimination Policy? Does the organization have a Whistle Blower Policy? Does the organization have a Document Destruction Policy? Affiliations 7

8 Affiliation Year Affiliate/Chapter of National Organization 1975 Senior Staff Mrs. Sarah Rose Mickle Title Development Director Experience/Biography Mr. Dustin Lawrence Tracy Title Development Director Experience/Biography Ms. Stephanie Anthony Title Logistics Specialist Experience/Biography 8

9 Financials Fiscal Year Fiscal Year Start Jan Fiscal Year End Dec Projected Revenue $1,235, Projected Expenses $548, Endowment Value $0.00 Endowment Spending Policy N/A Endowment Spending Percentage (if selected) 0% Detailed Financials Revenue and Expenses Total Revenue $192,528,975 $148,459,096 $1,826,428 Total Expenses $299,650,531 $192,986,761 $1,826,428 Revenue Sources 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 $18,508,156 $9,248,415 $218,729 Indirect Public Support $934,247 $0 $26,548 Earned Revenue $2,262,494 $2,213,262 $0 Investment Income, Net of Losses $64,634,644 $41,308,326 $0 Membership Dues $0 $0 $0 Special Events $86,167,903 $0 $1,581,151 Revenue In-Kind $11,538,445 $0 $0 Other $8,483,086 $95,689,093 $0 9

10 Expense Allocation Program Expense $254,657,450 $170,590,615 $1,565,116 Administration Expense $22,208,493 $13,275,455 $80,882 Fundraising Expense $22,784,588 $9,120,691 $180,430 Payments to Affiliates $0 Total Revenue/Total Expenses Program Expense/Total Expenses 85% 88% 86% Fundraising Expense/Contributed Revenue 22% 99% 10% Assets and Liabilities Total Assets $3,919,394,927 $3,803,485,303 $0 Current Assets $111,517,486 $307,299,379 $0 Long-Term Liabilities $0 $0 $0 Current Liabilities $187,239,749 $124,060,775 $0 Total Net Assets $3,732,155,178 $3,679,424,528 $0 Short Term Solvency Current Ratio: Current Assets/Current Liabilities Long Term Solvency Long-Term Liabilities/Total Assets 0% 0% -- Top Funding Sources Top Funding Source & Dollar Amount Fundraising Events $86,167,903 Other Revenue $95,689,093 Fundraising Events $1,581,151 Second Highest Funding Source & Dollar Investment Income Investment Income Contributions, Gifts & Amount $64,634,644 $41,308,326 Grants $218,729 Third Highest Funding Source & Dollar Amount Contributions, Gifts, and Grants $18,508,156 Contributions, Gifts, and Grants $9,248,415 Federated Campaigns $26,548 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 The audit was prepared for the national organization and the Form 990 includes figures specific to the TN chapter. For 2011 and 2012, numbers displayed represent NATIONAL figures taken from audit and 990, as no TN 10

11 Chapter statements have been provided. Audit completed by KPMG LLP. TN Chapter Form 990 was prepared internally by the nonprofit. Comment provided by Nicole Rose 04/09/2018. Created Copyright 2018 The Community Foundation of Middle Tennessee 11