Arrhythmia Alliance
19 Executive Park Road
Hilton Head Island SC 29938
Contact Information
Organization DBA (Doing Business As)
Organization DBA
STARS USA
Address 19 Executive Park Road
Hilton Head Island, SC 29938
Telephone (843) 415-1886
E-mail h.bryan@heartrhythmalliance.org
Projected Annual Revenue $140,000.00 (2016)
Mission Statement

Arrhythmia Alliance (A-A) is a non-profit coalition of patients, caregivers, clinicians, healthcare professionals, policy makers, allied professionals and all those interested in or affected by cardiac arrhythmias (heart rhythm disorders).  A-A seeks to improve diagnosis, expand treatment, and enhance quality of life for all those affected by cardiac arrhythmias.

Leadership
CEO/Executive Director Mrs. Trudie Lobban
Board Chair Nigel Breakwell
Board Chair Company Affiliation Arrhythmia Alliance
History and Background
Year of Incorporation 2006
Former Names
NameYear
STARS2015
STARS US INC2016
Financial Summary
Revenue vs Expenses Bar Graph - All Years
Graph: Expense Breakdown Graph - All Years
Revenue vs Expenses Area Graph - All Years

Comparing revenue to expenses shows how the organizations finances fluctuate over time.

Source: IRS Form 990

 Breakdown
Net Gain/Loss:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.
Statements
Mission

Arrhythmia Alliance (A-A) is a non-profit coalition of patients, caregivers, clinicians, healthcare professionals, policy makers, allied professionals and all those interested in or affected by cardiac arrhythmias (heart rhythm disorders).  A-A seeks to improve diagnosis, expand treatment, and enhance quality of life for all those affected by cardiac arrhythmias.

Background

 Arrhythmia Alliance was established in 2004 as a non-profit organization with the aim of working together to improve the diagnosis, treatment, and quality of life for all those affected by arrhythmias.

 
STARS (Syncope Trust and Reflex Anoxic Seizures) charity was founded in the United Kingdom in 1993 by Trudie Lobban after her daughter, Francesca, was diagnosed with Reflex Anoxic Seizures.  Francesca's first seizure was at the age of 10 months old and was not accurately diagnosed until she was three-and-a-half years old.  Trudie wrote to every pediatric neurologist she could find in the UK and parts of the US.  Finally she received a phone call from a pediatric neurologist in Scotland, Dr. John Stephenson, who named the condition (RAS) in 1978 and is a world expert. After many tests Dr. Stephenson was able to diagnose Francesca with RAS. 

After the diagnosis, Trudie was dismayed to find there was no support or treatment for her daughter.  Dr. Stephenson suggested she start a support group for others that were experiencing the same frustration she had.  She knew she wasn't alone with her fears, that there were others who were experiencing the same nightmare.  She also knew that Syncope can be extremely difficult to diagnose leaving sufferers, parents and doctors in a terrifying limbo - not knowing what's wrong and living in constant fear of another attack.  In her quest to support and educate others Trudie created STARS. 

Today, STARS receives 8,000 requests a month from people in just that position.  A large amount of these requests come from the United States.  The need to establish STARS in the United States was evident. June, 2006, STARS officially became a registered 501(c)3 non-profit organization and began their ever so important mission.

Impact

Accomplishments
(1) Two lives were saved in 2016 using the automated external defibrillators that Arrhythmia Alliance helped to place in all of Bluffton Fire Department's patrol cars.
(2) In October 2016, Arrhythmia Alliance placed its 3,000th automated external defibrillator (AED) worldwide.
(3) As of November 2016, Arrhythmia Alliance had conducted 1 million pulse checks in 30 countries.
 
Goals
(1) Equip 15 to 20 additional police cars with automated external defibrillators
(2) Educate Bluffton, Hilton Head Island, Beaufort, Hardeeville, and Ridgeland on the process of becoming HEARTSafe communities and begin making progress toward achieving this designation in each community
(3) Host 'Know Your Pulse' events across the region to inform, educate, and raise awareness of heart rhythm disorders
 
 
Needs

1.       HEARTSafe Community

This program needs initial funding for the public access defibrillators as well as setting up Pulsepoint with EMS and dispatch. The whole program cost will be around $150,000, however this program will last well over a year

2.       Volunteer Base

Since our organization has gained ground over the past year, we are now in need of volunteers as well as specific activities and tasks for them to work with us on

3.       Partnership with local hospitals

 

4.       Know your Pulse Program- $30,000

 

5.       Website $8,000

CEO/Executive Director Statement

Arrhythmia Alliance was established in 2004 as a non-profit organization with the aim of working together to improve the diagnosis, treatment, and quality of life for all those affected by arrhythmias.

 
STARS – Syncope Trust And Reflex anoxic Seizures Inc.  - was established initially in the UK however following thousands of US enquiries from patients, caregivers and healthcare professionals we applied and received our 501© 3 status to operate in the USA.  6% of visits to ER each year are due to syncopal episodes (loss of consciousness) and 3% of all hospital admissions are due to syncope.  Yet with the correct diagnosis and management many of these visits, unnecessary costs and anxiety could be avoided.  With the correct information and knowledge patients can learn to manage or receive appropriate treatment, caregivers are trained in how to manage a syncopal episode and healthcare professionals are better equipped to offer a quicker diagnosis and appropriate treatment and advice.  All this is made possible by the reliable resources and support STARS offers.  All our work and materials are written by healthcare professionals, reviewed by volunteer patients and caregivers for ease of understanding and endorsed by the American College of Cardiology for accuracy.  STARS is THE only organisation in the world offering such resources and services. We are recognised worldwide by cardiac societies and professional organisations.
Board Chair Statement

I established the organisation many years ago upon a long journey trying to receive a diagnosis for my daughter whom at the time was suffering from Syncope and experiencing up to eight syncopal episodes per day.

No one understood her symptoms, doctors told me I was being over protective, others claimed it was merely temper tantrums – being a mum, I was not willing to give up, my little girl was in danger and I was determined to get an answer and a course of action.

Finally, having contacted all cardiologists around the UK, I eventually received a response from Professor John Stephenson from Glasgow, Scotland. Without hesitation I made an appointment to see him, and my little girl and I travelled by train to meet with him.

Would this be the end of my nightmare? Would my little girl finally be cured? It was not all plain sailing, Reflex Anoxic Seizures cannot be cured by medication sadly, however, a diagnosis from Professor Stephenson was hugely appreciated and confirmed that I was not a neurotic or over protective mother.

Following the initial consultation and later diagnosis, Prof S asked me to establish a small helpline organisation to aid other parents and offer support to those in a similar position. I was only too glad to do so, given that I had struggled for over 2 years to find anyone experiencing similar circumstances as myself.

This lead to my passion, and thus the success of the organisation. The growth and success all stemmed from working at the kitchen table from home, talking to a handle of other parents following the diagnosis and understanding of RAS. This has always been the backbone and foundations of my work. Which has lead to international recognition of our work, medical publishing’s, awards, etc. never did I expect the charity to grow to the level that it has done, but not once have I regretted accepting John’s proposal of starting a so-called ‘helpline’. Prof Stephenson estimated 10-12 phones per year; I am lucky if I receive less than this per day now. The last 23 years have been amazing; they have had highs and lows, but the outreach, support and awareness that has been shared and raised has been worth ever minute of my time.

My friends and family have joined me along the way – my elderly parents have helped with mailshots; my daughters’ have ‘designed’ graphics for out first newsletter, my husband has shared his financial knowledge and time, my friends have volunteered their time. With every obstacle, every year of operation, the charity has grown – all stemming from my personal experience, but all strengthened and supported by the patient and caregiver members of the organisation and the staff whom are employed.

Areas of Service
Area
Beaufort County
Jasper County
Bluffton, Hilton Head Island, Beaufort, Ridgeland, and Hardeeville
Board Chair
Board Chair Nigel Breakwell
Company Affiliation Arrhythmia Alliance
Term Nov 2016 to Apr 2017
Email nigel@heartrhythmalliance.org
Board of Directors
NameAffiliation
Mr. Daniel Beach Ketchum
Mr. Nigel Breakwell Community Volunteer
Trudie Lobban STARS-US
Mr. Jim Quance Hilton Head Lexus
Mr. Joey Reynolds Community
Mr. John Thompson Community
Board Demographics - Ethnicity
African American/Black 0
Asian American/Pacific Islander 2
Caucasian 10
Hispanic/Latino 0
Native American/American Indian 0
Board Demographics - Gender
Male 7
Female 5
Governance
Written Board Selection Criteria? No
Written Conflict of Interest Policy? Yes
Percentage Making Monetary Contributions 0%
Number of Full Board Meetings Annually 3
Other Boards
The tables below contain information about other groups that advise this nonprofit on operations and projects.
Executive Director
Executive Director/CEO Mrs. Trudie Lobban
Experience

 

In 1993 Trudie Lobban established STARS as a result of her own daughter being diagnosed with Reflex Anoxic Seizures. Trudie brought together a multi-disciplinary group of professionals consisting of pediatricians, geriatricians, neurologists and cardiologists to form the STARS Medical Advisory committee. 

May 2004 saw the first Arrhythmia Awareness Week and the establishment of Arrhythmia Alliance A-A. The Arrhythmia Alliance is a coalition of charities, patient groups, healthcare professionals, Department of Health, Government and industry allies all working together. The A-A, under the leadership of Trudie, played a large role in the lobbying of government for a new Chapter in the National Service Framework for Coronary Heart Disease on Arrhythmias.

In 2006, the first Heart Rhythm Congress was held, again the brainchild of Trudie Lobban, in partnership with HRUK.  This plays stage to a wealth of exhibitions, meetings, live cases, courses and conferences for medical professionals, industry, patients and carers.

In October 2007, Trudie established the Atrial Fibrillation Association following the demand from both patients and clinicians worldwide.  

Trudie sits on a number of medical boards such as:

  • Expert Group of National Service Framework Chapter 8 - Arrhythmia & Sudden Cardiac Death
  • Department of Health Implementation Board
  • Sudden Cardiac Death Sub Committee
  • National Heart Rhythm Management Device Taskforce
  • British Heart Foundation Arrhythmia Care Co-ordinator
  • British Heart Foundation Teen Site
  • Chair of Arrhythmia Awareness Week Committee
  • Council member of Heart Rhythm UK
  • National Campaign for Cardiac Rehab - committee member
  • Council member British Cardiovascular Society
  • Council member British Heart Foundation Cardio & Vascular Coalition  Committee
  • Member of Medical Technology Groups
  • International Alliance of Patient Organisations
  • National Institute Clinical Excellence Guideline Committee for Transient Loss of Consciousness

 

Staff
Full Time Staff 2
Part Time Staff 1
Volunteers 11
Contractors 0
Retention Rate 0%
Plans
Organization has a Strategic Plan? Yes
Date Strategic Plan Adopted Nov 2015
Years Strategic Plan Considers 5
Organization has a Fundraising Plan? No
Management Succession Plan? No
Organization Policy and Procedures No
Diversity Policy Yes
Nondiscrimination Policy Under Development
Whistleblower Policy Yes
Document Destruction Policy Yes
Directors and Officers Insurance Policy No
Programs
Description Defibs Saves Lives is a project in Bluffton County to create the first HEARTSafe registered community in the state of South Carolina. We are working with Bluffton Fire District, Bluffton Police Department and Beaufort County EMS to place Public Access Defibrillators in order to increase the survivability of sudden cardiac arrest in the Low Country. 
Budget 175000
Short Term Success Establish ourselves as a HEARTSafe community: In 2016: 1600 people trained in CPR/AED; establish and fund a public access defibrillator program; and work towards a culture of excellence by self-evaluating our communities response to increase survivability. 
Long Term Success A HEARTSafe community is based on sustainability. Once we have established and registered as a HEARTSafe community, we will continue to re-evaluate and improve our efforts. Although a 100% survival rate is unlikley, every additional life saved after sudden cardiac arrest is important. We would like Beaufort County to be one of the safest places to live, and be a victim of sudden cardiac arrest in the United States. 
Strategy Yes
Program Success Monitored BY
Statistics on survivability after sudden cardiac arrest
Data from EMS, fire district and police department.
Data from CARES registry 
Description The Know Your Pulse (KYP) campaign was the cornerstone of Heart Rhythm Week in 2010 and 2011. It has provided a campaigning focus for thousands of events and has led to some significant advances in awareness, policy and the management of heart rhythm disorders. The campaign continues today, promoting the need for us all to be aware of our pulse, and for the need to include routine manual pulse checks.
Short Term Success Patrons learn how to take their pulse and conduct regular checks
Long Term Success If pulse checks were routine, thousands of lives, and thousands of debilitating strokes, could be saved every year.
Strategy Yes
Fiscal Year
Fiscal Year 2016
Projected Revenue $140,000.00
Projected Expenses $46,961.00
Endowment Value $0.00
Spending Policy Income Only
IRS Letter of Exemption
Detailed Financials
Expense Allocation
Fiscal Year201420132012
Program Expense$30,700$36,240$19,749
Administration Expense$57,906$25,317$27,687
Fundraising Expense$11,965----
Payments to Affiliates------
Total Revenue/Total Expenses0.900.021.13
Program Expense/Total Expenses31%59%42%
Fundraising Expense/Contributed Revenue13%0%0%
Assets and Liabilities
Fiscal Year201420132012
Total Assets$47,202$57,116$116,309
Current Assets$45,914$55,180$114,064
Long-Term Liabilities$1,936$0$0
Current Liabilities$0$1,936$540
Total Net Assets$45,266$55,180$115,769
Short Term Solvency
Fiscal Year201420132012
Current Ratio: Current Assets/Current Liabilities--28.50211.23
Long Term Solvency
Fiscal Year201420132012
Long-Term Liabilities/Total Assets4%0%0%
Top Funding Sources
Fiscal Year201420132012
Top Funding Source & Dollar Amount -- -- --
Second Highest Funding Source & Dollar Amount -- -- --
Third Highest Funding Source & Dollar Amount -- -- --
Capital Campaign
Currently in a Capital Campaign? No
State Charitable Solicitations Permit
Registration Yes May 2017
Nonprofit Arrhythmia Alliance
Address 19 Executive Park Road
Hilton Head Island, SC 29938
Primary Phone (843) 415-1886
CEO/Executive Director Mrs. Trudie Lobban
Board Chair Nigel Breakwell
Board Chair Company Affiliation Arrhythmia Alliance
Year of Incorporation 2006
Former Names
STARS
STARS US INC