The Lung Cancer Research Council Inc
26146 RAMPART BLVD
PUNTA GORDA FL 33983-6207
Mission
The mission of the Lung Cancer Research Council is to increase public awareness and understanding about lung cancer and to promote screening and early detection of lung cancer among the at risk population in order to extend and save lives.
Leadership
CEO/Executive Director No Executive Director
Board Chair Mr Thomas E Cappiello
Board Chair Affiliation Community Volunteer
General Info
Tax Exempt Status Public Supported Charity
Incorporation Year 2014
State Charitable Solicitations Permit Yes May 2018
State Registration Yes Dec 2018
Financial Summary
Note: Revenue includes the value of in-kind contributions/donations
 
IRS Letter of Determination
Name
IRS LETTER OF DETERMINATIONView
Impact Statement
    2017 LCRC Accomplishments
    • Organization of a lung cancer screening trial in SW Florida (on-going) with Millennium Physicians Group, Moffitt Cancer Center and Florida Cancer Specialists.  The goal of the screening trial is to provide research data on the efficacy of screening in a demographic area outside a major city.
    • Sponsorship of the digital publication of NCCN Lung Cancer Screening Guidelines for Patients distributed nationally

    • Sponsorship of the digital publication of NCCN Patient Guidelines distributed nationally

    • Creation of educational videos and PSAs about lung cancer

    2018 LCRC Goals
    • To continue the SW Florida lung cancer screening trial in conjunction with Millennium Physicians Group, Moffitt Cancer Center and Florida Cancer Specialists targeting 1,000 at risk patients.  
    • To create and provide posters for all cigarette POS locations within Charlotte County containing tear-off information regarding the importance of lung cancer screening.
    • To design a campaign in support of the Virginia B. Andes Community Clinic to provide lung cancer screenings for all at risk patients with no health insurance.
    • To offer continued support for NCCN in providing essential resources for lung cancer patients and their families nationwide.
    • To educate though speaking engagements thru Rotary Clubs in SW Florida.
     
     
    Needs Statement
    1. The Lung Cancer Research Council has organized a 3 year screening trial in Charlotte County, Florida in conjunction with Millennium Physician Group, Florida Cancer Specialists, and Moffitt Cancer Center. We have hired a nurse navigator to orchestrate the trial and will need to fund her up to $40,000 per year for the duration of the trial.
    2. We are a financial sponsor of the NCCN Guidelines for Patients: Non-Small Cell Lung Cancer. This annual publication is published as a digital brochure and is also available for purchase on Amazon. https://www.nccn.org/patients/guidelines/lung-nsclc/index.html  $10,000.
    3. We are looking to fund up to $40,000 informational tear-off pads distributed at the point of sale of tobacco products in Charlotte County Fl. We expect that we will need on the order of 140 pads per store for 180 stores.
    Background Statement

    The Lung Cancer Research Council, Inc. was founded as an all-volunteer advocacy organization to shine a light on lung cancer and promote screening and early detection to save lives.  Thomas Cappiello, Marc Cohen and Irene Gargiulo, all lung cancer survivors, were the founding board members.  Thomas Cappiello has been an active advocate for lung cancer since being diagnosed in 2007. For the first five years of his advocacy he volunteered for The National Lung Cancer Partnership. He also wrote a weekly newspaper column called "Living with Lung Cancer" which became the basis of his book "Living with Lung Cancer -- My Journey" which he self-published in 2012. His book is currently available on Amazon and Kindle. Proceeds from the sale of his book are donated to the Lung Cancer Research Council. 

    Marc Cohen is a Stage IV lung cancer survivor and Irene Gargiulo is a Stage I survivor. Both Irene and Marc run lung cancer support groups in Charlotte and Sarasota.  Together with Thomas Cappiello they agreed to begin the Lung Cancer Research Council to focus on lung cancer awareness and screening.
     
    The Lung Cancer Research Council is focused on awareness and screening because it is the one place where no other lung cancer charity is currently focused and is the one area of advocacy where we believe we can do the most good with the least resources. 
     
    Despite the fact that lung cancer is the leading cause of cancer death and takes more lives that breast, prostate, colon and kidney cancer COMBINED, it gets less federal funding than any other cancer.  Organizations like the National Lung Cancer Partnership, AKA Free to Breathe, The Lung Cancer Alliance, Lungevity and others have focused on raising funding for basic research or political advocacy to increase Federal research funding.
     
    The Lung Cancer Research Council's goal is to become the leading advocate for promoting research into screening and early detection. At the same time we are attempting to make our charity an all-volunteer organization with  no-fixed overhead so that the funding we raise is 100% used for programs in support of our mission.  We have no fixed place of business and no employees.  Our office is on a hosting platform in the cloud. 
     
     
    Areas Served
    Areas Served
    Area
    FL- Charlotte
    FL- Sarasota
    FL- Lee
    National
    Areas Served Comments  The Lung Cancer Research Council is currently focused on Charlotte and Sarasota Counties, but intends to expand into Lee and Collier counties in the future. Our target audience is all of SW Florida from Naples to Sarasota and then expanding from there, depending on funding.  Funding for NCCN Patient Guidelines is a national program.
    Service Categories
    Primary Org Type Health Care
    Secondary Org Type Medical Research
    Tertiary Org Type Diseases Disorders & Medical Disciplines
    Statement from the Board Chair/Board President

    I’ve been campaigning as a lung cancer advocate since 2009, when, on my own, I organized a run/walk to raise awareness during November, which is lung cancer awareness month.  That first race was a great success, raising over $50,000. I've been organizing an annual race ever since. This year I organized my ninth race and once again raised $50,000 . In the first four years the money raised by the race was used to support the National Lung Cancer Partnership’s program to fund lung cancer research by young investigators.  In the last five years, I have used the annual race to fund The Lung Cancer Research Council's programs to raise awareness and promote screening and early detection.

    Lung cancer screening using low-dose CT scan is now accepted medical protocol. Our mission is to make sure that people most at risk of developing lung cancer (former smokers and current smokers over the age of 55) are aware of the need to get an annual screening.

    The Lung Cancer Research Council together with Lung Cancer Alliance funds the NCCN Patient Guide for Non-Small Cell Lung Cancer. The digital brochure is free and provides 122 pages of essential information about lung cancer that every newly diagnosed patient and caregiver needs to know, including what lung cancer is, how it is staged, treatment options, and making treatment decisions.   https://www.nccn.org/patients/guidelines/lung_screening/

    I received a letter not too long ago from woman thanking me for alerting smokers and former smokers over the age of 55 about getting an annual screening for lung cancer. A column I wrote inspired her to get screened, which resulted in her finding early stage lung cancer last December at the age 72.  Thankfully, because it was found early, she was a candidate to have the cancer surgically removed and now has a good prognosis for living a much longer life.  This is just one example of the people we are trying to save.

    Today there are 70 million Americans who did the right thing and quit smoking. Still, roughly 15% of those who have quit will develop lung cancer sometime during their lifetime.  That is 14 million people whose life might be saved through screening and early detection. If we are successful in our mission we would greatly increase the five year survivor rate from the current low rate of just 15%.
     
    Only 300 screenings of asymptomatic individuals with a 30 pack year history of smoking is required to find one lung cancer. By comparison, you need to screen 1000 women to find one breast cancer. The trick is getting people at risk educated to act and be screened annually. By the time you become symptomatic it is often too late.  
     
    Our biggest challenge is to accrue a sufficient number of former smokers into a screening program to make a difference. Even Moffitt Cancer Center is having difficulty in accruing patients to annual screenings.  Engaging with primary care physician groups interested in improving demographic outcomes is key.  We believe our proposed local screening program would be one of the first of its kind in the nation outside of a major cancer center. We hope to create a successful screening program template that can then be used in other rural communities.
     
    Thomas Cappiello
    Board Chair 
     
     
     


    Statement from the CEO/Executive Director


    Programs
    Description  The Lung Cancer Research Council has been operating two lung cancer support groups: one in Sarasota and one in Charlotte County.  These are the only lung cancer support groups in the area and they have been continuously operating since 2013. The support groups do not require a substantial financial investment, but do require an investment in time and effort by our volunteers and volunteer physicians who come to speak.  These include pulmonologists, general practice doctors, thoracic surgeons, oncologists, radiologists, pain management specialists, respiratory therapists, and others. 
    Budget $1,000
    Category Diseases, Disorders & Medical Disciplines, General/Other Lung Diseases
    Program Linked to Organizational Strategy Yes
    Population Served At-Risk Populations People/Families of People with Cancer General/Unspecified
    Short Term Success

    Over the years we have had as many as 28 people and caregivers attending support group sessions. We don't operate support groups to gather and report data, but we do know that offering support groups has been shown to improve a patient's outlook and extend life.  Many caregivers who have lost a loved one to lung cancer will continue to come to support group to help others. 

    When we started the Lung Cancer Research Council, we could only identify four people who were survivors. At our most recent race, there were over 20 survivors in attendance.  Unfortunately we have also collected the names of over 500 people in Charlotte County who did not survive.
    Long Term Success

    Research studies show that patients who participate in a support groups tend to do be better informed, develop a better attitude about their disease and as a result do better and live longer. 

    Program Success Monitoring

    Several of our late stage lung cancer patients are still with us, and continue to give back to help others.

    Program Success Examples

    Marc Cohen, who has been with us since we started, is an excellent example of someone who has been fighting Stage IV lung cancer for the past five years.  Many of our late stage lung cancer patients are still with us, despite the fact that the average life expectancy for lung cancer patients with late stage disease is only 3 years.

    Comments
    Program Comments by Organization
    1. The Lung Cancer Research Council supports two monthly support groups. One support group meets at Sarasota Memorial on the third Wednesday of every month and is run by Marc Cohen, a director of the Lung Cancer Research Council. A second support group meets at Bayfront Punta Gorda Medical Office Building and is run by Lung Cancer Research Council founding director Irene Gargiulo. Support group membership and attendance varies. We have had as many as 28 people in attendance during any one month group meeting and as few as zero in attendance at times. The Lung Cancer Research Council provides financial support to the support groups, including printed materials about lung cancer, advertising, insurance coverage, etc. One way we are finding new recruit volunteers is through these support groups. Support and promotion of support groups and giving patients hope is an important program. 
    2. The Lung Cancer Research Council has been a financial sponsor of the NCCN Guidelines for Patients: Non-Small Cell Lung Cancer. This annual publication is published as a digital brochure and is also available for purchase on Amazon. https://www.nccn.org/patients/guidelines/lung-nsclc/index.html. The Lung Cancer Research Council has been funding the publication of NCCN's Patient Guidelines as part of the mission to increase lung cancer awareness. Members of our board review and comment on the publication. The 122 page brochure is distributed nationally to all comprehensive cancer centers. We have not collected data from NCCN with respect to the number of people who have downloaded this digital brochure, but this document is one of the most authoritative guides for patients who have been diagnosed with lung cancer.
    CEO/Executive Director
    CEO/Executive Director No Executive Director
    CEO Term Start 0
    CEO/Executive Director Email N/A
    Former CEOs/Executive Directors
    NameTerm
    Senior Staff
    NameTitle
    Staff & Volunteer Statistics
    Full Time Staff 0
    Part Time Staff 0
    Staff Retention Rate % N/A
    Professional Development No
    Contractors 1
    Volunteers 72
    Management Reports to Board N/A
    CEO/Executive Director Formal Evaluation N/A
    Senior Management Formal Evaluation N/A
    Non-Management Formal Evaluation No
    Collaborations
    We do not currently have any formal affiliation or collaborations, but we are working with a number of local healthcare providers, including Millennium Physician Group, Florida Cancer Specialists, Moffitt Cancer Center, Fawcett Memorial Hospital, The National Comprehensive Cancer Network (NCCN), LungCan (The Lung Cancer Action Network) and others. 
    External Assessments and Accreditations
    Assessment/AccreditationYear
    Risk Management Provisions
    Government Licenses
    Organization Licensed by the Government No
    Plans
    Fundraising Plan Yes
    Communication Plan No
    Strategic Plan No
    Strategic Plan Years
    Strategic Plan Adopted 0
    Management Succession Plan No
    Continuity of Operations Plan No
    Policies
    Nondiscrimination Policy Yes
    Whistle Blower Policy No
    Document Destruction Policy No
    Directors and Officers Insurance Policy Yes
    Policies and Procedures No
    Comments
    Management Comments by Organization

    To date we continue to operate with no physical space or any full time employees.  We also continue to utilize Zypha, a cloud based office space platform where we keep and maintain all of our records and correspondence.  Our monthly retainer is still in affect with Priority Marketing, based in Ft. Myers, to be our virtual marketing department.  They create news releases, videos, and other collateral materials we disseminate along with helping us to run events and to create lung cancer awareness in the community.  Grasshopper serves as our virtual phone system and all our mail is sent to a PO Box in Port Charlotte. Our book-keeper retrieves our mail, does the accounting and reconciles our bank statement every month. Our bookkeeper sends out donor acknowledgements. 

    Documents in the mail are scanned and forwarded to our Zypha account. To provide some separation of duties we have an accounting firm, Webb Lorah & McMillan, prepare our annual 990 and perform a high spot review of the books and records. Thomas Cappiello, as the board chair and CEO, has the only checkbook to pay invoices.  Thomas Cappiello pays ordinary expenses without board approval.  By practice he seeks board approval  (via electronic vote) for all out of the ordinary expenditures over $3000, except for ordinary expenses related to our annual race.

    The success of the Lung Cancer Research Council is totally dependent on volunteers who have stepped up to take on projects and create awareness of lung cancer.  The Lung Cancer Research Council will be ever grateful to those individuals who have supported our organization and are committed to saving lives.  
    Multi-Media Comments by Organization The Lung Cancer Research Council uses both social and multi-media as a method to engage, inform and inspire the local and national community. By sharing statistics and useful information about screenings, support groups and fundraising through a range of mediums we are able to increase awareness. 
    Board Chair
    Board Chair Mr Thomas E Cappiello
    Company Affiliation Community Volunteer
    Board Term Dec 2017 to Dec 2020
    Board Chair Email tecappiello@gmail.com
    Board Members
    Board Members
    NameAffiliation
    Dr. Vance Wright Browne MDFlorida Cancer Specialists
    Mr. Thomas Edward Cappiello Community Volunteer
    Mr. Marc Cohen Lung Cancer Survivor
    Dr. Thomas Kartis MDBayfront Port Charlotte
    Mr Roy McKinley Millennium Physicians Group
    Mrs Lynda Platt Community Volunteer
    Constituency Includes Client Representation Yes
    Board Ethnicity
    African American/Black 0
    Asian American/Pacific Islander 0
    Caucasian 5
    Hispanic/Latino 0
    Native American/American Indian 0
    Other 0 1 (Jamacian)
    Board Gender
    Male 4
    Female 2
    Unspecified
    Governance
    Board Term Lengths 3
    Board Term Limits 99
    Board Orientation No
    Number of Full Board Meetings Annually 2
    Board Meeting Attendance % 71
    Board Self-Evaluation No
    Written Board Selection Criteria No
    Board Conflict of Interest Policy Yes
    % of Board Making Monetary Contributions 70
    % of Board Making In-Kind Contributions 80
    Standing Committees
    Executive
    Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
    Comments
    Governance Comments by Organization

    The Lung Cancer Research Council has struggled somewhat with board development since we operate without an Executive Director.  We began with three survivors, one of whom is Marc Cohen, a Stage IV survivor.   Marc continues to undergo treatment and has only been able participate in a limited fashion. Irene Gargiulo, a founding member of the board, served as treasurer but given her limited knowledge of finance, deferred to Thomas Cappiello, Board Chair.  Irene resigned as a director and treasurer in 2015 and was replaced by Lynda Platt.  At the November 2016 board meeting Lynda became Secretary and Roy McKinley became Treasurer.  Roy is the COO of Millennium Physician Group and approached us to become involved as he has a parent with lung cancer.  

    We specifically sought out board members who are physicians battling this disease.  Dr. Thomas Kartis is a local thoracic surgeon, but his busy schedule has prevented him from being active on the board.
      
    Attendance at our 2017 board meetings increased as our meetings were scheduled one year in advance.  Also we now have a few more active board members making a great impact for our cause.  We have the ability to continue to expand the board to up to 15 members and we are seeking new members to expand our reach and capabilities.
     
    Current Year Projections
    Tax Year Start Month Jan
    Tax Year Start Day 01
    Tax Year Begins 2018
    Tax Year End Month Dec
    Tax Year End Day 31
    Tax Year Ends 2018
    Projected Revenue $100,000.00
    Projected Expenses $30,000.00
    Total Projected Revenue includes "in-kind" contributions/ donations No
    Organization has Endowment No
    Endowment Spending Policy N/A
    Capital Campaign
    Currently In a Capital Campaign No
    Anticipate Campaign within 5 years? No
    Campaign Purpose
    Campaign Goal
    Amount Raised To Date 0 as of 0
    IRS Form 990s
    9902016
    9902015
    9902014
    9902013
    Financial Review
    Expense Allocation
    Fiscal Year201720162015
    Program Expense$66,795$92,049$43,951
    Administration Expense$21,000$3,232$3,759
    Fundraising Expense$0$0$0
    Payments to Affiliates$0$0$0
    Total Revenue/Total Expenses0.741.011.28
    Program Expense/Total Expenses76%97%92%
    Fundraising Expense/Contributed Revenue0%0%0%
    Assets and Liabilities
    Fiscal Year201720162015
    Total Assets$59,737$82,845$82,344
    Current Assets$59,369$78,925$82,344
    Long-Term Liabilities$0$0$0
    Current Liabilities$0$0$0
    Total Net Assets$59,737$82,845$82,344
    Top Funding Sources
    Fiscal Year201720162015
    Top Funding Source & Dollar AmountEvent Revenue $34,754Program Service Revenue $58,371Program service revenue $50,152
    Second Highest Funding Source & Dollar AmountContributions, gifts, grants $29,880Contributions, gifts, grants $37,411Contributions, gifts, grants $10,859
    Third Highest Funding Source & Dollar AmountFoundation and Corporate Support $530 $00 $0
    CEO/Executive Director Compensation
    Tax Credits No
    Solvency
    Short Term Solvency
    Fiscal Year201720162015
    Current Ratio: Current Assets/Current Liabilities------
    Long Term Solvency
    Fiscal Year201720162015
    Long-Term Liabilities/Total Assets0%0%0%
    Financials Comments
    Financial Comments by Organization

    Because we have no fixed overhead, if we stopped working on our mission, the Lung Cancer Research Council could shut down and have very little in terms of continuing expenses.  There is a provision in our by-laws that, should we decide to cease operations, we would wind down the organization with net proceeds to be sent to Moffitt Cancer Center for lung cancer research.

    We make a small profit every year but are still considerably behind where we hoped to be financially when we began this endeavor.  We have raised roughly $270,000 since our inception and we have roughly $80,000 in the bank in cash, which means that in the last four years we have spent about $190,000 to operate the charity or not quite $50,000 a year on average. Our biggest variable expense is our virtual marketing department, which costs about $20,000 a year. The other major expense is putting on our annual race, which also costs about $20,000 a year.

    We consider all the money we spend on our annual race or marketing to be awareness "programs".  We are now moving to develop a screening program and see the possibility of getting grant funding from the State of Florida for this project or other sources.
     
    Our financial goal when we started was to have multiple races in multiple counties throughout the year, but just putting on a single race annually has proven to be a large undertaking.  What we need to do is find advocates in Sarasota and Lee Counties to organize race events in their local area.  We have created the template and vehicle.  All we need now is to find dedicated volunteers to help us in these other communities who would be willing to take on the task.
    Financial Comments by Foundation Financial information taken from the organization's Federal 990-EZ.  Contributions may include foundation and corporate support as they are not separately stated on the tax return.  Financial information for 2017 taken solely from unaudited compilations as the Federal tax return was not available at time of review.
    Nonprofit The Lung Cancer Research Council Inc
    Address 26146 RAMPART BLVD
    PUNTA GORDA, FL 33949 6207
    Phone 855 452-2623

    THE COMMUNITY FOUNDATION OF SARASOTA COUNTY, INC. IS A REGISTERED 501(C)(3) NON-PROFIT CORPORATION. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE (1-800-HELP-FLA) OR FROM THE WEBSITE: WWW.FRESHFROMFLORIDA.COM. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. ONE HUNDRED PERCENT (100%) OF EACH CONTRIBUTION IS RECEIVED BY THE COMMUNITY FOUNDATION OF SARASOTA COUNTY. REGISTRATION #SC-2471.