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 2017
State Registration Yes Mar 2017
Financial Summary
 
 
IRS Letter of Determination
Name
IRS LETTER OF DETERMINATIONView
Impact Statement
  • Creation of public awareness through organizing awareness events, including an annual 5K Run/Walk that has attracted significant publicity during Lung Cancer Awareness Month each November

  • Generation of newspaper and magazine coverage related to lung cancer screening and early detection

  • Creation of our website to disseminate information about lung cancer

  • Creation of an educational videos and PSAs about lung cancer

  • Creation of a Facebook page with over 1000 people reached per week

  • Creation of a Twitter Account with over 680 followers nationally

  • 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

  • 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 cancer center using a primary care physician's group to accrue and follow patients.


 
Needs Statement
  1. The Lung Cancer Research Council is currently organizing a screening trial in Charlotte County, Florida. We will be partnering with Millennium Physician Group, Florida Cancer Specialists, and Moffitt Cancer Center. We are expecting to hire one or two nurse navigators over the course of the next year and we are going to need to fund up to $50,000 in salaries for navigation.
  2.  It is uncertain where the nurse navigators will be based, but we may need to fund $20,000 for office space, telephone, computers, office supplies, etc. as the project proceeds.
  3. We are also looking to fund the creation of a PSA to promote lung cancer awareness and screening. We expect the PSA video will cost $5000 to produce and we would like to purchase $20,000 of commercial airtime to air the PSA in SW Florida.
  4. 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.
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 had 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.  We have not to date applied for any grants.
 
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 eighth 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 four 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

One of the things that makes The Lung Cancer Research Council unique is that it is an all volunteer organization. We don't have an executive director or any paid employees. We are not interested in creating a large organization with lots of fixed overhead, as much as we are interested in being successful in our mission to promote lung cancer awareness, screening and early detection.  Every dime we raise goes toward our "programs" of raising awareness and promoting screening and early detection. Every day we are making slow but steady progress. 

This year's race included a t-shirt contest among the four middle school art students in Charlotte County. The Lung Cancer Research Council funded $400 in art supplies for the schools to design a t-shirt for our 2016 race. One shirt from each school was then selected to be posted on Facebook and the public was asked to vote for their favorite. Partnering with Tobacco Free Charlotte and SWAT (Students Working Against Tobacco), the idea of a t-shirt design contest was to generate awareness about the danger of smoking among middle school students. The design contest attracted over 900 likes and 2700 page visits on Facebook.

When we began working on our mission, it was not clear to us how we could best proceed.  Over the last three years our mission had become clear and us encapsulated in our slogan "FIND, TREAT, CURE" to summarize our objective.

We've been in existence for just three years. In that time we've created a website for lung cancer patients, sponsored the NCCN lung cancer patient guideline, produced numerous articles for newspapers and magazines, produced multiple PSA videos, supported two lung cancer support groups, and engaged key media and businesses to support our efforts.  Our races and other events have raised approximately $270,000 in funding over the last four years and allowed us to build a small cash position of roughly $80,000, which will be used for our upcoming screening program and operating expenses. Our largest donor has been South Florida Ford Dealers, who have provided $60,000 in sponsorships, followed by Truly Nolen, who has provided over $20,000 to our cause.
 
 
 
 
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 Under Development
Communication Plan Under Development
Strategic Plan Under Development
Strategic Plan Years
Strategic Plan Adopted 0
Management Succession Plan Under Development
Continuity of Operations Plan
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

Because we do not operate with physical space or any full time employees, we have had to work on setting up virtual systems to carry out the day to day operations of our charity.  We have a cloud based office space using a platform called Zypha. http://www.zypha.com  We are doing all of our record keeping in the cloud using Zypha.  We have hired Priority Marketing, based in Ft. Myers, to be our virtual marketing department with a monthly retainer to maintain our website, Facebook page, maintain our race website, create news releases, videos, and other collateral materials we disseminate and help us with running events. We have set up Grasshopper to serve as a virtual phone system. We have all our mail 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, expect for ordinary expenses related to our annual race.

The Lung Cancer Research Council is dependent on volunteers stepping up to take on projects and task.  We are currently overly dependent on only a few key people so we need to work on creating committees to organize fundraising events, support groups, creating collateral materials and news articles, interface with other lung cancer groups, etc.  
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 Feb 2013 to Dec 2017
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
Dr. Mathew Schabath Phd.Moffitt Cancer Center
Dr Ron Smith MDRiverside Surgery
Constituency Includes Client Representation Yes
Board Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 7
Hispanic/Latino 0
Native American/American Indian 0
Other 0 1 (Jamacian)
Board Gender
Male 6
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 % 40
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.  In our most recent board meeting Lynda became Secretary and Roy McKinley became Treasurer. We are now starting to delegate executive duties, so it is not all on the board chair.

To gain some legitimacy, in 2014 we specifically sought out board members who are physicians battling this disease.  Dr. Ron Smith and Dr. Thomas Kartis are local thoracic surgeons, but their busy schedules have prevented them from being active on the board. Dr. Eric Haura from Moffitt, who is the head of Moffitt's lung cancer research department, is also very busy and had low participation at board meetings. 
 
This year Dr. Haura suggested we replace him with Dr. Matt Schabath, who specializes in epidemiology and is specifically researching lung cancer screening. Matt joined the board this past summer.  We also recently recruited the COO of Millennium Physician Group, Roy McKinley, who has a parent with lung cancer and was seeking us out to become involved.
 
Part of the problem with governance has been scheduling. All of our board members are busy and many are physicians who have a heavy and pressing patient load.  Even scheduling board meetings by phone in advance has not succeeded in improving attendance. Naturally,patient care comes first.  We have scheduled our board meetings for 2017 in advance and we now have a few more active board members, so our attendance will improve. Our board meetings are in April and November.  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.
 
Fiscal Year Projections
Fiscal Year Start Month Jan
Fiscal Year Start Day 01
Fiscal Year Begins 2017
Fiscal Year End Month Dec
Fiscal Year End Day 31
Fiscal Year Ends 2017
Projected Revenue $80,000.00
Projected Expenses $69,000.00
Total Projected Revenue includes "in-kind" contributions/ donations Yes
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
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
IRS Form 990s
9902015
9902014
9902013
Historical Financial Review
Expense Allocation
Fiscal Year201520142013
Program Expense$43,951$44,157$38,717
Administration Expense$3,759$5,257$2,554
Fundraising Expense$0$0$0
Payments to Affiliates$0$0$0
Total Revenue/Total Expenses1.281.651.89
Program Expense/Total Expenses92%89%94%
Fundraising Expense/Contributed Revenue0%0%0%
Assets and Liabilities
Fiscal Year201520142013
Total Assets$82,344$69,609$36,800
Current Assets$82,344$69,609$36,800
Long-Term Liabilities$0$0$0
Current Liabilities$0$556$100
Total Net Assets$82,344$69,053$36,700
Top Funding Sources
Fiscal Year201520142013
Top Funding Source & Dollar AmountProgram service revenue $50,152Program Service Revenue $68,622Contributions, gifts, grants $42,132
Second Highest Funding Source & Dollar AmountContributions, gifts, grants $10,859Contributions, gifts, grants $13,145Program service revenue $35,839
Third Highest Funding Source & Dollar Amount0 $00 $00 $0
CEO/Executive Director Compensation
Tax Credits No
Solvency
Short Term Solvency
Fiscal Year201520142013
Current Ratio: Current Assets/Current Liabilities--125.20368.00
Long Term Solvency
Fiscal Year201520142013
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.
Nonprofit The Lung Cancer Research Council Inc
Address 26146 RAMPART BLVD
PUNTA GORDA, FL 33949 6207
Phone 941 889-9688

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-02471.