The Leukemia & Lymphoma Society, Inc.

Transcription

1 The Leukemia & Lymphoma Society, Inc. SUMMARY Mission The Leukemia & Lymphoma Society (LLS) is the world s largest voluntary health organization dedicated to funding blood cancer research and providing education and patient services. Founded in 1949, we are relentless in pursuit of our mission: Cure leukemia, lymphoma, Hodgkin s disease and myeloma, and improve the quality of life of patients and their families. Contact Information Primary Address 3507 E. Frontage Rd Suite 300 Tampa, FL Alternate Address 3507 E. Frontage Rd Suite 300 Tampa FL Phone Alternate Phone donorservices@lls.org Website General Information nprofit Former Names Leukemia Society of America Tax Exempt Status The Leukemia & Lymphoma Society, Inc. Public Supported Charity Incorporation Year 1949 State Charitable Solicitations Permit Feb

2 State Registration Feb

3 BACKGROUND & NEEDS Impact Statement 1. Top accomplishments: Helped change legislation in the State of Florida by organizing grass roots advocacy utilizing patients and volunteers. New legislation mandates insurance companies must charge equally for cancer patients being treated through newer, oral cancer drugs as they do for patients being treated with IV infusions. A huge win for cancer patients throughout Florida! 2. Conducted a high-quality research update for 150+ patients and family members highlighting the work of an LLS funded researcher, Dr. Christopher Cogle, doing research in the area of multiple myeloma at The University of Florida. 3.Realized 23% year over year chapter growth in net income 4. Realized 10% year over year growth in First Connection Program, which matches newly diagnosed patients with survivors of the same diagnosis that have already been through treatment Goals for FY14: 1. Pilot an intership program with USF Nursing for graduate oncology nursing students which will help LLS provide increased one-on-one support with patients. 2. Hold a chapter wide Lymphoma Conference partnering with a major oncology provider in order to provide information and education to patients and caregivers. 3. Develop a Volunteer Leadership Council to represent the needs of blood cancer patients in our Southwest counties including Charlotte, Sarasota and Manatee. Do a community needs assessment to determine the best use of LLS resources in serving our Southwest Florida Counties. 4.Conduct a research focused presentation for patients and caregivers provided by an LLS funded researcher. Needs Statement 1. A Sarasota based Leadership Group to help fulfill and direct our program, fundraising, and advocacy initiatives in Manatee, Hardee, Sarasota, Desoto and Charolotte counties, with representation to serve on the Suncoast Board of Trustees. 2.Pro bono grant research and writing assistance. 3. Donated space with a desk, phone and internet access for staff to use in between meetings when they are working in the Sarasota area. 4. $2,500 to fund three Focus Groups: One each in Manatee, Sarasota and Charlotte, to help LLS gather information that will better define the needs of blood cancer patients in these areas so we can build useful and meaningful programs and services for local constituents. Background Statement The Leukemia & Lymphoma Society (LLS) was founded in 1949 by the de Villiers family, five years after the death of their 16 year old son from leukemia. The de Villiers were frustrated by the lack of effective treatments for what was, at that time, considered a hopeless disease so they started a fundraising and education organization in their son's name. LLS was started with the help of a few volunteers and a tiny budget. At that time, most leukemia patients, especially children, died within three months. Since then, LLS has morphed into the largest not-for-profit organization in the world dedicated to funding blood cancer research and providing education and patient services. We work out of 62 Chapters in the U.S. and Canada. The research we ve helped fund has changed the way blood cancers are treated and improved lifeexpectancies and quality of life for thousands of men, women and children who are living with them. To date, LLS has invested more than $875 million in research aimed at helping all blood cancer patients live better, longer lives. We will continue to support research through our innovative and integrated funding programs until every patient has a safe and effective therapy. In FY2012 LLS supported research in the U.S., Canada and 7 other countries with a total research disbursement of approximately $68.4 million. The Suncoast Chapter consists of ten local counties on the gulf coast of Florida. They include: Charlotte, Sarasota, DeSoto, Manatee, Hardee, Pinellas, Hillsborough, Pasco, Hernando and Citrus. Through our chapter office we connect local patients with education programs, support groups, First Connections matches, information, financial aid, and co-pay assistance. We work with people of all ages, races and backgrounds, offering assistance in both English and Spanish. 3

4 Statement from the Board Chair Many people have personal missions attached to charities, my mission is linked to a long family history of leukemia. As the President of The Leukemia & Lymphoma Society, Suncoast Chapter Board of Trustee s, it is my pleasure and privilege to help in our local efforts to move forward the mission of LLS. The Leukemia & Lymphoma Society is a little different than many local, independent not-for-profits in that it is one organization nationwide, with 62 chapters serving communities in the U.S. and Canada. Governance of the organization is done by the National Board of Directors. At the chapter level, the Board of Trustees consists of volunteer leadership from various communities, backgrounds, and experiences who come together with an important job, to help the organization move the mission forward locally. We are dedicated to identifying and recruiting talented, resourceful members to our Suncoast Board who will be passionate for the LLS mission and will access resources to support our efforts. We work closely with the chapter Executive Director and designated staff to assist the chapter in achieving its revenue and mission goals. Board members provide guidance and support to chapter fundraising teams while ensuring the Chapter offers LLS patient services and advocacy programs. The challenges we face as an organization are the same challenges faced by many charities. We must work within a small budget to fulfill a big mission. Our organization is constantly challenged with lack of awareness, not only that we exist, but that we are here to help people diagnosed with blood cancers. Our ten county geography makes it difficult for staff to build positive, cohesive relationship with people in outlying markets. While it isn t cost effective to fund offices in every community, it is often challenging to serve communities where offices don t exist. Some of the steps we are taking to overcome these challenges are: Increasing our fundraising effectiveness by recruiting high-caliber volunteer leadership to lead our core campaigns. Looking to recruit a local PR/Advertising firm (pro bono) who will help us build brand awareness. Engaging volunteer ambassador s in outlying markets who will be our local representatives in their communities. We all have a responsibility to care for others, to help those less fortunate than ourselves. There is no greater reward than providing financial and educational support to children & families dealing with Leukemia. Together we are doing great things, we in fact are moving mountains Sincerely, Barry Scott President Suncoast Chapter Board of Trustees Statement from the CEO/Executive Director I am frequently asked what set LLS apart from other cancer organizations. While we all do good, and important work, we all have our unique personalities. For LLS one of the most obvious differences is the fact that we don't spend money on prevention campaigns. There is no way to prevent blood cancers and no screenings that can help with early detection. Because of that, we are able to dedicate more money to finding cures. LLS funds more blood cancer research than any other organization except the U.S. government. We have a proven track record of success in blood cancer research. Studies of "liquid" versus "solid" cancers can be easier and more productive, leading to laboratory and clinical breakthroughs. Blood cancer research produced the first broadly effective chemotherpies and the first successes in molecularly targeted therapies. Almost half of the new cancer drugs approved in the U.S. since 2000 (21/50) were apprvoed to treat one or more blood cancer, and LLS helped advance most of them. Another important thing that sets us apart is that LLS is one of the last cancer organizations still providing direct financial support for patients. This is vastly important to those patients and families who are struggling financially due to the high-costs of cancer treatment. It is also important to our donors who want to know they are helping their friends and neighbors who are fighting cancer. A large number of our Suncoast staff and volunteers are involved in our fundraising activities. We raise 100% of 4

5 our money through special events and private donations. We are not government funded. Areas Served Throughout the United States Internationally The Leukemia & Lymphoma Society has 62 chapters throughout the United States and Canada and funds research nationally and internationally. The Suncoast Chapter serves ten Florida counties including: Charlotte, Sarasota, Manatee, Desoto, Hardee, Pinellas, Hillsborough, Pasco, Hernando and Citrus. Service Categories Primary Organization Type Secondary Organization Type Diseases Disorders & Medical Disciplines Medical Research 5

6 PROGRAMS Patient Services Programs Description LLS is committed to providing support and guidance to patients and the health professionals who care for them. The Information Resource Center (IRC) provides accurate, up-to-date, disease-related information and referral services The Trish Greene Back to School Program for Children with Cancer focuses in ensuring a smooth transition for children that have been in cancer treatment, back to school. Support Groups encourage communication among patients. Patient Financial Aid are stipends to help cover minor treatment costs. Co-Pay Assistance Program helps patients meet their health insurance premiums or co-payment obligations. Patient & Professional Education Programs are offered in many communities on various subjects of importance to patients and caregivers. Pattie Robinson Kaufmann First Connection Program links newly diagnosed patients to a peer volunteer who has experienced a similar diagnosis. Budget $85, Category Program Linked to Organizational Strategy Diseases, Disorders & Medical Disciplines, General/Other Cancer Population Served People/Families of People with Cancer Adults Children and Youth (0-19 years) Short Term Success Long Term Success Short term successes include initiatives we are currently working on such as: Eliminating the current healthcare insurance disparities in the State of Florida for those patients being treated with oral chemotherapy drugs versus patients being treated with IV infusions by We are currently working on a needs assessment in our chapter to determine the specific needs of local blood cancer patients in all our communities. This will help guarantee that the programs we offer in each community are relevant and not redundant for our local patients. We also want to increase our number of First Connection matches in 2012/13 to 100. Our ultimate ideal of long-term success will be to find cures for each type of blood cancer. Interim successes include: Providing timely and relevant disease and treatment information to 90% of blood cancer patients within the first four months after diagnosis. This would mean increasing the awareness of our organization so physicians will provide referrals to us for their patients at the time of diagnosis. Eliminating barriers, governmental and otherwise, to access to care for blood cancer patients. 6

7 Program Success Monitoring Program Success Examples Each year our Patient Services Manager develops a Mission Plan for our chapter. It includes goals for the standards programs offered in every LLS chapter, as well as plans to implement education programs relevant to specific communities and populations. Each quarter, the Executive Director, Patient Services Manager and a national program manager review the status of the mission plan to determine progress. Educational programs presented in the community always include an evaluation form that must be filled out by all attendees. This helps us rate ourselves and make sure the quality, integrity and relevance of our programs are maintained. At the close of the Trish Greene Back to School Program for Children with Cancer, attendees should be able to: Describe common childhood cancers and treatments. Identify challenges for survivors Explain laws that protect childhood cancer survivors rights. Implement strategies to help meet the students' short and long-term educational needs. Access resources that support schools and fmailies including those from LLS. At a recent presentation of this program attended by 206 school nurses and guidance counselors, 195 agreed or strongly agreed these objectives were met, 6 were not sure, and 5 disagreed. 7

8 MANAGEMENT CEO/Executive Director CEO/Executive Director CEO Ms. Sherri Stitt Senior Staff Lourdes Arvelo Patient Services Manager Sherry Yagovane Campaign Director Staff & Volunteer Statistics Full Time Staff 10 Part Time Staff 0 Staff Retention Rate % 60 Professional Development Contractors 5 Volunteers 600 Management Reports to Board CEO/Executive Director Formal Evaluation Senior Management Formal Evaluation nmanagement Formal Evaluation Collaborations The Leukemia & Lymphoma Society, Suncoast Chapter, collaborates with various organizations in the communities we serve including: The Tampa Bay Cancer Coalition The Oncology Nursing Association The Black Nurses Association The Children's Cancer Center Southwest FL Cancer Controll Collaborative Latinos Unidos por un Nuevo Amanecer Hillsborough County Dept. of Health The Cancer Support Community Comments Mangement Comments by Foundation Julie Wills no longer with the organization, Kelly Lesperance is the interim Executive Director. 8

9 GOVERNANCE Board Chair Board Chair Mr. Barry Scott Company Affiliation AON Risk Management Board Term July 2012 to June 2014 Board Chair Board Co-Chair Board Co-Chair Ms. Sheila Donovan Company Affiliation Met Life Home & Auto Board Term July 2012 to June 2014 Board Co-Chair Board Members Name Affiliation Status Mr Stephen Alvarado Covance Clinical Development Voting Mr. Paul Anderson Tampa Port Authority Voting Gregoire Bergier MD Florida Cancer Specialists Voting Mrs. Janene Culumber H. Lee Moffit Cancer Center & Research Institute Voting Ms. Sheila Donovan Met Life Auto & Home Voting Mrs. Dorothy Fields Meridian Management Group Voting Mr. William Gieseking Pepin Distributing Company Voting Mr. Suliman Hemani PNC Bank Voting Mrs. Kristen Keller Berkely Preparatory School Voting Ms. Brooke Palmer RSBP Events Voting Ms. P.J. Sardinas Quest Diagnostics Voting Mr. Barry Scott AON Voting Mr. Jon M Trombetto WMS Raymond James & Associates Voting Ms. Regan Zayas MBA, RD, LD/N Florida Hospital Voting Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 12 Hispanic/Latino 1 Native American/American Indian 0 Other 1 Indian 9

10 Board Demographics - Gender Male 7 Female 7 t Specified 0 Governance Board Term Lengths 3 Board Term Limits 2 Board Orientation Number of Full Board Meetings Annually 5 Board Meeting Attendance % 72 Board Self-Evaluation Written Board Selection Criteria Percentage of Board Making Monetary Contributions 100 Percentage of Board Making In-Kind Contributions 20 Constituency Includes Client Representation Standing Committees Board Development / Board Orientation Executive Legislative Program / Program Planning Comments Governance Comments by Organization Trustee Development is an area of focus in the Suncoast Chapter. We currently have 14 Trustees and will vote two additional trustees in very soon. By the end of FY14 we plan to increase our Board to between high quality Board members. We switched our Board Retreats to June in order to engage the Board more heavily and planning and goal setting for the fiscal year, which begins July 1st. We are also engaging our board to tackle at least one deep discussion topic at each meeting. 10

11 FINANCIALS Current Financial Info Fiscal Year Begins 2013 Fiscal Year Ends 2014 Projected Revenue $1,792, Projected Expenses $916, Endowment Value $0.00 Spending Policy N/A Spending Policy Percentage 0 Tax Credits Capital Campaign In a Capital Campaign Campaign Goal 0 Anticipate Campaign Within Next 5 Years? IRS Form 990s Pro Forma Proforma 990 Proforma 990 Proforma 990 Audit/Financial Documents Financial Statement Financial Statements Financial Statements Financial Statements Financial Statements Solvency Short Term Solvency Current Ratio: Current Assets/Current Liabilities Long Term Solvency Long-Term Liabilities/Total Assets 0% 0% 0% Historical Financial Review 11

12 Revenue and Expenses Total Revenue $1,218,003 $1,449,574 $1,344,705 Total Expenses $1,229,026 $1,427,787 $1,306,789 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 $1,218,003 $1,449,574 $1,344,705 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 $0 $0 Other $0 $0 $0 Expense Allocation Program Expense $922,314 $1,094,696 $986,419 Administration Expense $137,072 $149,636 $144,540 Fundraising Expense $169,640 $183,455 $175,830 Payments to Affiliates $377,862 $447,283 $369,936 Total Revenue/Total Expenses Program Expense/Total Expenses 75% 77% 75% Fundraising Expense/Contributed Revenue 14% 13% 13% Assets and Liabilities Total Assets $13,526 $34,257 $61,415 Current Assets $13,526 $34,257 $61,415 Long-Term Liabilities $0 $0 $0 Current Liabilities $38,043 $47,751 $96,695 Total Net Assets ($24,517) ($13,494) ($35,280) Top Funding Sources Top Funding Source & Dollar Amount Contributions, gifts, grants $1,218,003 Contributions, gifts, grants $1,449,574 Contributions, gifts, grants $1,344,705 Second Highest Funding Source & Dollar 0 $0 0 $0 0 $0 Amount Third Highest Funding Source & Dollar Amount 0 $0 0 $0 0 $0 Comments Financial Comments by Foundation Financial information taken from IRS Form 990s. Individual contributions include foundation and corporate support. Financial compilations cover a 14 month period. 12

13 PLANS, POLICIES & LICENSES Plans Fundraising Plan Communication Plan Strategic Plan Strategic Plan Adopted June 2012 Years Strategic Plan Considers 3 Management Succession Plan Continuity of Operations Plan Policies Organizational Policies and Procedures Written Conflict of Interest Policy ndiscrimination Policy Directors and Officers Insurance Policy Risk Management Policy Risk Management Provisions Whistle Blower Policy Document Destruction Policy Government Licenses Is your organization licensed by the Government? Created Copyright