A Life Story Foundation
11161 E State Road 70
Suite 110-112
Bradenton FL 34202
Mission
A Life Story Foundation was created to raise awareness to create action to find treatments for, and ultimately, a cure for ALS.
Leadership
CEO/Executive Director Mr Kevin J Swan
Board Chair Kevin Swan
Board Chair Affiliation A Life Story Foundation
General Info
Organization DBA
DBA
ALSF
Tax Exempt Status Public Supported Charity
Incorporation Year 2013
State Charitable Solicitations Permit Yes Nov 2017
State Registration Yes July 2018
Financial Summary
 
 
Projected Revenue $495,000.00
Projected Expenses $515,000.00
IRS Letter of Determination
IRS Letter of DeterminationView
Impact Statement
  • Named as a Global Affiliate of the ALS Therapy Development Institute
  • Created a professionally produced video of ALS patient, with over 200,000 views
  • Designed and launched an animated video explaining the journey from "petri dish to patient"
  • Recruited 3 strong board members
Needs Statement
  1. Recruit 4-6 volunteers for ongoing project work, specifically in PR and marketing
  2. Determine if a paid staff member would be leveraged by production (40,000)
  3. Create 2-4 more local chapters of ALSF in other cities (Phoenix, Chicago)
  4. Produce 3-5 more impactful videos of people living with ALS and the need for treatments (5,000 - 7,000 each)
  5. Leverage work and relationships of other ALS foundations 
Background Statement
A Life Story Foundation was created by Kevin Swan, 35 shortly after his ALS diagnosis in February, 2012. He was struck by how few people knew about it and frustrated by the lack of treatment, let alone a cure for a disease that had been "named" over 75 years ago. Determined not to be defined by the disease, Kevin recruited a small group to take on this despicable disease to raise awareness of it and to partner with a leading ALS research center to find treatments and a cure. A Life Story Foundation has teamed up with ALSTDI, a non profit, in Cambridge, MA, whose sole focus is ALS. (ALS.net)
Areas Served
Areas Served
Area
National
Areas Served Comments Because so much of what we do is online, we are able to reach audiences around the world. Our physical fundraising events are largely local in Florida but we have had very successful yoga and  Giving Challenge campaigns that were online. 
Service Categories
Primary Org Type Medical Research
Secondary Org Type Medical Research
Tertiary Org Type Health Care
Statement from the Board Chair/Board President
This past year has had some challenges as so many organizations "compete" for dollars. We did, however, have an outstanding Giving Challenge in 2016, and won the "best overall" campaign in our size! That brought us over $40,000. We also had our best local event, 2017 Prohibition Party, which netted $120,000. Our last event of the year is Yoga for ALS, which takes place the last two weeks of June, 2017. We are hosting sessions in Chicago, Houston, Washington DC, Phoenix, Bradenton and Sarasota.
Statement from the CEO/Executive Director
A Life Story Foundation was created because, while there are other great groups out there, (ALSA, MDA), we felt we wanted to directly impact both awareness and ACTION to find treatments and a cure for ALS. Others focus on patient care, technology, or a myriad of diseases. A Life Story is laser focused on its mission statement.
Programs
Description Create a National Yoga Day  (6/16 - 6/25, 2017) with events in several cities to raise awareness of ALS - Yoga is a natural since it deals with the very muscles that ALS attacks. Participants will build teams and pledge to help fund research.     
Budget $5,000
Category Medical Research, General/Other Amyotrophic Lateral Sclerosis Research
Program Linked to Organizational Strategy Yes
Population Served US Adults Families
Short Term Success Short term success would be that we engage 500-1000 people in yoga sessions in multiple cities, raise 10000- 15000 to go to ALS research at ALSTDI
Long Term Success Long term success would be that thousands more people know more about ALS and are moved to action - no treatment or cure for a disease that has been around for more than 75 years
Program Success Monitoring We use web-based analytics to monitor site traffic, registration, as well as financial contributions
Program Success Examples We are committed to forwarding 60% of every dollar raised to fund research - if this program generates incremental revenue, we will know it is a successful method of donor engagement
Description
This is an annual event held in Florida. It is an upscale but fun evening aimed at raising awareness of ALS through a short video as well as a check presentation to our research partner, ALS TDI, in Cambridge, MA. Through sponsorships which have grown every year as well as ticket sales,
we grossed over $105,000
Budget $10
Category Medical Research, General/Other Amyotrophic Lateral Sclerosis Research
Program Linked to Organizational Strategy Yes
Population Served Adults People/Families with of People with Physical Disabilities US
Short Term Success Each year we have been able to donate more funds for ALS research - from $15,000, to $25,000 and this year $70,000.
Long Term Success Funding research is always a long time effort to which we are dedicated. In addition to reaching more people every year, we are confident we are making a difference.
Program Success Monitoring We do a post event survey to tweak anything we feel we can do better, We also monitor our website traffic and donations through Google analytics.
Program Success Examples Through our support and others, ALS TDI was able to move a clinical trial up by two years. For an ALS patient, that could literally be life saving,
Description A family friendly event in Chicago, 8/21/16, at a table tennis venue in the city. Since it is now an Olympic sport and a new "hot" sport at a brand new location, we are trying something new
Budget $3,500
Category Medical Research, General/Other Amyotrophic Lateral Sclerosis Research
Program Linked to Organizational Strategy Yes
Population Served Adults US& International Other Health/Disability
Short Term Success We project a modest $10,000 net proceeds from this event which provide funds for producing 2 more videos, raising awareness of ALS
Long Term Success Long term success will be measured by "hits" to our videos and tracking donations as a result.
Program Success Monitoring We review results prior, during and after each of our programs.
Program Success Examples We use Google analytics to track traffic, views, length of time on site, and donations. If our "stories" our working, we will see upticks on all.
Comments
Program Comments by Organization We are currently working on several strategic and professionally executed videos utilizing social media to reach an even wider base. We want our touch to be ongoing, rather than largely through events. The creation of our two videos have been very successful in reaching a broad audience through social media. They have helped raise awareness and also driven online donations from across the country. 
CEO/Executive Director
CEO/Executive Director Mr Kevin J Swan
CEO Term Start Apr 2012
CEO/Executive Director Email Kevinswan@alsfteam.org
Experience
Founder of Foundation
Prior Director of Communication, SingleHop, Chicago, IL 
Former CEOs/Executive Directors
NameTerm
Senior Staff
NameTitle
Staff & Volunteer Statistics
Full Time Staff 1
Part Time Staff 0
Staff Retention Rate % 100
Professional Development Yes
Contractors 0
Volunteers 10
Management Reports to Board Yes
CEO/Executive Director Formal Evaluation No
Senior Management Formal Evaluation N/A
Non-Management Formal Evaluation N/A
Collaborations
ALSTDI - ALS Therapy Development Institute, Cambridge, MA - ALS research facility
Origent - Business Intelligence data mining organization,  Virginia
Sentrana - Business Intelligence Company - Washington, DC
Richer Poorer Socks - California
Google - in-kind analytics and web optimization 
External Assessments and Accreditations
Assessment/AccreditationYear
Awards & Recognition
Award/RecognitionOrganizationYear
ADDYAmerican Advertising2014
Leadership AwardALS Therapy Development2013
Global AffiliateALS.net2016
Board Seat - Julie Swan - CFO A Life Story FoundationALS Therapy Development2016
Risk Management Provisions
Government Licenses
Organization Licensed by the Government No
Plans
Fundraising Plan Yes
Communication Plan No
Strategic Plan No
Strategic Plan Years 2
Strategic Plan Adopted Feb 2016
Management Succession Plan Yes
Continuity of Operations Plan No
Policies
Nondiscrimination Policy Yes
Whistle Blower Policy No
Document Destruction Policy No
Directors and Officers Insurance Policy No
Policies and Procedures Yes
Comments
Management Comments by Organization
With almost an entirely volunteer base and only one full time employee, we are working to streamline processes and cast a wider net of volunteers.
 
Multi-Media Comments by Organization We use Facebook,  Huffington Post, Instagram and Twitter constantly
Board Chair
Board Chair Kevin Swan
Company Affiliation A Life Story Foundation
Board Term Apr 2016 to July 2018
Board Chair Email kevinswan@alsfteam.org
Board Members
Board Members
NameAffiliation
Ms Susan Moseley Moseley Investment
Ms Iva Pawling Richer Poorer
Ms Diane Day Sanders Retired
Julie Swan Retired
Kevin Swan A Life Story Foundation
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 0
Board Gender
Male 1
Female 4
Unspecified 0
Governance
Board Term Lengths 2
Board Term Limits 3
Board Orientation Yes
Number of Full Board Meetings Annually 3
Board Meeting Attendance % 100
Board Self-Evaluation Yes
Written Board Selection Criteria No
Board Conflict of Interest Policy Yes
% of Board Making Monetary Contributions 100
% of Board Making In-Kind Contributions 100
Standing Committees
Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
Fiscal Year Projections
Fiscal Year Begins 2016
Fiscal Year Ends 2017
Projected Revenue $495,000.00
Projected Expenses $515,000.00
Organization has Endowment No
Capital Campaign
Currently In a Capital Campaign No
Campaign Purpose
Campaign Goal
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
IRS Form 990s
9902016
9902015
990 20142014
9902013
Audit/Financial Documents
Historical Financial Review
Expense Allocation
Fiscal Year201620152014
Program Expense$503,509$509,937$90,000
Administration Expense$40,838$34,374$35,662
Fundraising Expense$48,703$14,560$0
Payments to Affiliates$0$0$0
Total Revenue/Total Expenses0.941.080.91
Program Expense/Total Expenses85%91%72%
Fundraising Expense/Contributed Revenue9%2%0%
Assets and Liabilities
Fiscal Year201620152014
Total Assets$67,460$157,665$62,975
Current Assets$26,854$111,843$62,975
Long-Term Liabilities$21,733$27,487$0
Current Liabilities$827$46,924$0
Total Net Assets$44,900$83,254$62,975
Top Funding Sources
Fiscal Year201620152014
Top Funding Source & Dollar AmountContributions, gifts, grants $479,703Contributions, gifts, grants $514,367Fundraising $95,495
Second Highest Funding Source & Dollar AmountFundraising $74,984Fundraising $86,427Contributions, gifts, grants $18,419
Third Highest Funding Source & Dollar Amount0 $0Investment Income $1550 $0
CEO/Executive Director Compensation $0 - $50,000
Tax Credits No
Solvency
Short Term Solvency
Fiscal Year201620152014
Current Ratio: Current Assets/Current Liabilities32.472.38--
Long Term Solvency
Fiscal Year201620152014
Long-Term Liabilities/Total Assets32%17%0%
Financials Comments
Financial Comments by Organization Like many other ALS groups, the Ice Bucket Challenge was a phenomenal, but one time fundraiser. A Life Story Foundation realizes that we must grow internally and strategically to move to the next phase of our evolution as an organization. The appointment of 3 new board members who bring years of impressive professional experience in the for profit world was one of our first steps to becoming scalable and sustainable. 
Financial Comments by Foundation Financial information taken from Federal Forms 990 and 990-EZ.  Contributions include foundation and corporate support.
Nonprofit A Life Story Foundation
Address 11161 E State Road 70
Suite 110-112
Bradenton, FL 34202
Phone 713

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