Volunteer Action Guide

Building on Our Success

STARS plays a vital role in educating and supporting individuals who suffer from Syncope as well as their families/caregivers, the general public and those in the medical world to the causes, needs, understanding and treatments related to unexplained loss of consciousness (Syncope).  The key to our success is providing the proper tools.  A toll free helpline, educational materials, website, message boards which are all the tools we continue to offer and build on.

The STARS logo and literature has been updated to allow the general public to identify STARS, our mission and how we can help. Do not deviate from this logo.

Our branding is designed to help and inspire you, not restrict you. No matter where you live the message of STARS will be the same. This ‘Toolkit’ is designed to help you in your volunteer work and includes many practical tips and background information on STARS.

Our Vision

Our vision is vital to the way we promote ourselves. It includes our beliefs, our objectives, and our determination to succeed in our purpose. The essence of this vision for the future of STARS is that the conditions affecting our sufferers are well known and understood.

Our Goals for the next five years:

  • To enable medical professionals to recognize Syncope.
  • To have an active presence in every state throughout the nation.
  • To be a household name for Syncope support.
  • To be financially secure.
  • To educate the schools on Syncope and the care plan of a sufferer.

We will achieve these goals by:

  • Increasing our volunteer base to encompass all 50 states.
  • Increasing our employees to 10
  • Establishing branches around the nation.
  • Providing educational presentations to be used primarily in schools and to all kinds of groups within the general public.
  • Continuing to highlight the important work of STARS and offer support via annual and ongoing conferences, patient meetings, awareness events and our website.

"We need you to share our vision because, together, we can make a difference."
Trudie Lobban, Founder

What we need to tell people

Our main goal within the organization is to increase awareness of Syncope and the work STARS does by building on the aspirations and determination expressed in our vision by emphasising:

  • The scale of the problem of Syncopal attacks.
  • The crucial importance of what we do.
  • The relevance of our work to our key audience.
  • The reasons why we need to involve as many people as possible in our work.
  • The importance of fundraising to generate on-going sustainable income in order that we can continue our work.

Some important facts:

  • Syncope affects a million-and-a-half Americans each year.
  • Up to 50% of the population will lose consciousness because of Syncope (blackouts) at some point in their life. Epilepsy affects less that 1% of the population. Either condition can affect people of all ages. Many Syncope attacks are mistaken for epilepsy. It can be difficult, even for experts, to tell the causes apart.
  • Every patient presenting an unexplained blackout should be given a 12-lead ECG (heart rhythm check). If there is uncertainty about diagnosis the ECG should be reviewed by a heart rhythm specialist.
  • Over 70% of syncope sufferers endure migraine headaches, depression or anxiety because of their attacks, and a similar number alter their daily activities to avoid the risk of blacking out in embarrassing or dangerous circumstances.

(More important facts can be found in the “Blackouts Checklist.”)

STARS is committed to raising the profile of Syncope (blackouts) and to establish better understanding and a speedy diagnosis.

Our four main areas of focus:

  • Offering support for sufferers and their family/caregiver.
  • Provision of a toll-free helpline.
  • Providing vital information and signposting.
  • Raising awareness within the medical arena and the general public.

We need you to help us by supporting our vital work. As a not-for-profit organization, STARS relies on donations of both time and money.

Together, we can make a great difference to so many sufferers, their families/caregivers.

How we talk to people

Every communication we produce affects the way people see us.  First impression is everything.  This ‘Toolkit’ will help identify the correct words to use when speaking about STARS and Syncope.  If used consistently it will create uniformity of STARS as well as the clear understanding of who we are and what we do.

Some helpful tips:

  • Avoid jargon when talking to the general public. Use everyday language wherever possible, rather than complex medical terms.
  • Use bullet points for clarity. Use full terminology i.e.: ‘Vasovagal Syncope’ and not ‘VVS’and give explanation where necessary. However, once explained, ‘VVS’ could then be used throughout the rest of your presentation.
  • Use clear and confident language, i.e. use ‘help’ not ‘assist’.
  • Use a warm and friendly tone. Use ‘we’ and ‘you’ whenever you can. Use personal stories (case studies) to engage your audience (the STARS office can help you with this).

Remember: If you are quoting facts and figures, it is important to check with the STARS office first to ensure that correct information is given and that confidentiality is not breached.

If you would like to speak to a group

When preparing a presentation, consider the following:

  • Have you highlighted the need for and importance of STARS?
  • Have you made it personal (by perhaps using case studies)?
  • Have you expressed our need for voluntary donations to do our work?
  • Are your key messages clear?
  • Have you checked the facts?
  • Have you read it aloud and are you happy with it?

Presentation materials (DVD, literature) are available from STARS.

BEFORE SPEAKING TO ANY GROUP YOU MUST HAVE THE APPROVAL OF STARS

Booklets and Promotional material

This literature is a very important aspect of STARS. It is always a good idea to have on hand when talking about STARS.

The following STARS Booklets are available:

Vasovagal Syncope (Reflex Syncope)
Syncope-types, causes, treatments and more.
STARS Introduction Brochure
Tilt Test
Insertable Loop Recorder
The Blackouts Checklist

Posters and Bookmarks are also available to assist with promotions, contact the STARS office.

Talking to the Media

You can help us enormously as a media volunteer to increase awareness of the various types of Syncope. Media coverage raises awareness of Syncope and STARS. Following the publication of articles, STARS receives many telephone calls and emails from concerned individuals seeking further information and sufferers seeking support. Media coverage also demonstrates to sufferers and their families that they are not alone and that people like yourself and STARS are working together on their behalf.

STARS - Our Message

It is important, whenever anyone connected with STARS talks to the media, that we all say the same thing. A selection of questions and answers are printed below setting out the information on STARS which will be helpful to you when dealing with the media.

REMEMBER BEFORE TALKING TO THE MEDIA CONTACT STARS

When STARS Contacts You for an Interview

The media will sometimes approach us to speak to someone who has experienced Syncope conditions with their child, or who personally suffers with Syncope, for an interview or to obtain a quote. We use your media form to match you up with their requirements. We try to obtain as much detail as possible from the journalist about the interview. We then give you this information so that you can decide whether or not you would like to be interviewed. There is never any pressure. We then put you in touch with the journalist. We always ask journalists to include details of STARS, and we ask you do the same.

STARS
Telephone- 843-785-4101
Email- info@stars-us.org
Website- www.stars-us.org

Interview Hints

Remember to get your key messages across - the journalist will be interested to know:

  • Who you are and what your role is.
  • What support and information STARS provides.
  • Your experience with Syncope.
  • Facts and Figures on Syncope.
  • Fundraising events.
  • Do not try to be an expert. Just share your own personal experience and stress that everybody’s experience is different. Please try to avoid commenting on medical procedures in general.
  • Never name a doctor or hospital. Always refer to ‘my doctor’ or ‘my local hospital’
  • Understand any question before answering it.
  • If you do not feel right or comfortable talking about their angle/subject, refer them back to us.
  • Ask them to include telephone and website details.

What To Do If The Media Approaches You

Sometimes the media may approach you directly. It is helpful if you can find out more information. Contact STARS who can help you make the most of this opportunity and advise you of an appropriate response.

Try to find out:

  • What paper, radio or TV station they are from.
  • Their name.
  • What section of the paper they write for. I.e. news, health, etc.
  • When their deadline is.
  • When the article is likely to appear.
  • What the article is about.
  • Do not feel pressured by them.
  • Tell them you will pass their details to STARS and when, if appropriate, you will call them back.

You Can Approach the Media Too

You do not have to always wait for the media to come to you. You could go to your local press whenever you have things to say or promote. Remember we can help you and advise you on the best way to contact them.  You could:

  • Call them or write to them to introduce yourself. Let them know you are available as a volunteer connected with STARS.
  • Send them a press release/information sheet on what you are doing, meeting, fundraising events, etc. (For advice or tips on writing press releases speak to the STARS office). NEVER SEND A PRESS RELEASE WITH OUT APPROVAL FROM STARS.
  • Write a letter to appear on the ‘letters’ page.
  • Invite the media to events, encourage a photographer to come along and take pictures.

Some Golden Rules

  • Advise us in advance. We will then be prepared for any telephone calls we may receive in connection with the article.
  • Communicate with STARS. Whenever you are in contact with the media please let us know.
  • Complete the media form. We cannot arrange any media work for you unless we have this.

Thing to Remember When Interviewed

  • Only talk about your own experience.
  • Credit yourself as a volunteer.
  • Remember the press needs you as much as we need them. Never feel pressured into talking about anything you are uncomfortable with.
  • Try not to be disappointed if the interview is dropped or is shorter than you thought. This does happen.
  • Send published copies to STARS for our records. These may be laminated and displayed at STARS conferences or used as examples for others.

Important Things To Know

STARS - The Organization

What is STARS?

STARS is a national non-profit organization, committed to improving the quality of life for individuals and their families coping with Syncope conditions. The main focus is educating and supporting sufferers, their families, the medical community and general public by offering a support system where they can obtain knowledge and understanding of these conditions.

STARS was founded 15 years ago in England by Trudie Lobban, after her daughter, Francesca, was diagnosed with Reflex Anoxic Seizures, a form of Syncope. Trudie was dismayed to find there was no support or information regarding her daughter’s condition. Her pediatric neurologist suggested she start a support group for others who were experiencing the same frustrations. In her quest to support and educate others on Syncope, STARS was created.  Because of the tremendous growth in demand for support and information from sufferers in the United States, STARS-US was established.

What support and information services are provided by STARS?

  • Information and reports on the various types of Syncope conditions.
  • Linking with similarly affected individuals and families.
  • Educational literature.
  • Newsletter, regional, national and international meetings.
  • Toll free helpline.
  • Syncope message board (monitored) for youth and adults.

Who does STARS help?

STARS acts as an information and support group for sufferers, their families/caregivers as well as providing information for the medical profession.

Why does STARS exist?

  • To act as an information and support group.
  • To bring about public and professional awareness.
  • To gather more information.

What area does STARS cover?

STARS is a national non- profit with its head office located in South Carolina. STARS also has an office in the United Kingdom which services sufferers, family members in Europe, Asia and Australia.

STARS mission statement

“Working together with individuals, families and medical professionals to offer support and information on Syncope conditions.

Fundraising for STARS

In order for STARS to achieve its goals and objectives we must rely on the help of volunteers.

To continue moving forward, increasing awareness and benefiting the lives of sufferers, their caregivers, families and friends we need everyone’s help. We require funds to continue to grow, to provide services and to meet the challenges ahead.

There are numerous ways to fundraise, host a spaghetti dinner at your church or school, a non-uniform day at school, a bake sale.

STARS will provide you with the tools you will need for your fundraising event; literature, posters, sponsorship forms, press releases and most important support. For a fundraising packet contact the STARS office.

For questions or more information contact Rebecca Smith, Executive Director
(843) 785-4101 or email info@stars-us.org