Sudden Arrhythmia Death Syndrome

The Sudden Arrhythmia Death Syndrome Foundation. Now that is a terrifying name. No wonder they call it the SADS Foundation. Although the name sounds scary, this organization is phenomenal in its support of those living with the reality of SADS.

If you or your loved one has a life threatening arrhythmia, then you should become the expert. A doctor can diagnose, evaluate, and treat your condition, but it is you that lives everyday with it. The SADS Foundation can help empower you.

 

Today I would like to do three things, 1) invite you to the 9th Annual International SADS Conference, 2) introduce you to the SADS website, and 3) offer you a way to donate to a great cause.
SADSConference
www.sads.org/conference2016#.V7NxfpgrK70

I have attended three of these annual conferences. My husband, Jeff, and I went to the second annual conference in Atlanta, Georgia. The year they opened the conference to teens, I took our oldest Long QT son to attend it in Salt Lake City, Utah. When our three younger Long QT kids were old enough, we joined my brother’s family at the conference, again held in Atlanta.

Each conference was extremely valuable. The latest treatments, research, and disease management strategies were presented and discussed. I had access to the most expert doctors through panel discussions and personal conversations. I made connections with others facing my same struggles. My kids had the same experience at their level.
Click on the above link for the details of this year’s conference in San Diego. You won’t want to miss the conference, so if you’re interested in sight seeing, add a couple days to your trip. 🙂 Be sure to find me and say hello, if you are able to make it.
sads Not everyone can afford the time or money to attend a conference. You also may need answers throughout the year, not just one weekend in October. The SADS Foundation is celebrating 25 years of offering support to the arrhythmia community. When they started, it was mostly by phone and mail service. Today they are an international organization. They have added a website and are all over social media, but they still offer that personal phone conversation.
flag SADS Foundation USA                                             flag SADS Foundation Netherlands

flag SADS Foundation Australia                                   flag SADS Foundation China

flag SADS Foundation UK                                               flag SADS Foundation Hong Kong

Explore the website. They offer an array of printed educational material, direction for working with your child’s school,  help if you have lost a loved one, ways to connect to others with your condition, and opportunities to be involved. This is just a sampling of their services.

Go to the “Living with SADS” section. If you complete the family registration form, then you will be placed on their mailing list. They publish a newsletter a couple of times a year. You can also sign up for their eNews.

TakeStepstoStopSADSFundraising is not my forte, but I’m going to give it a go. Here’s how this works. As part of the SADS Conference, I’m going to go walking on the beach in San Diego, California, and then eat snacks around a pool. I know, it’s a tough job, but somebody’s got to do it. Now for your contribution.Barbara Jeff at wedding

  • Go to https://www.crowdrise.com/take-steps-to-stop-sads .
  • Click on our picture, Team Barbara and Jeff.
  • Click on the orange “DONATE To This Fundraiser” button.
  • Choose a donation amount ($10 minimum) and complete the required information.
  • That’s it! Thanks for your contribution!

donation

They will make good use of every penny that you send them. Their website is a testament to this. Here’s a list of the services that they provide.

Patient and Family Support Services

  • National Physician Referral Service. A yearly updated list of knowledgeable physicians across the country.
  • Publication of an in-depth web site and an informational newsletter.
  • Publication of the “Inherited Long QT Syndrome” informational pamphlet in English, Spanish and French and the “Acquired Long QT Syndrome” pamphlet.
  • Dissemination of recent genetic and clinical findings concerning LQTS and related conditions.
  • National networking support program for individuals and families dealing with an unexplained sudden cardiac death in a young person, LQTS, etc.
  • Facilitate support groups held across the nation and provide National Contact Volunteers to assist families and patients.
  • Assist families in pedigree development to identify family members who might be at risk for arrhythmia from conditions like LQTS

Physician and Health Professional Education

  • Publication of an in-depth web site about unexplained sudden death in the young, LQTS, and other primary cardiac arrhythmia disorders.
  • Distribute an informational newsletter. Over 30,000 issues mailed out each year.
  • Publication of the “Inherited Long QT Syndrome” informational pamphlet in English, Spanish and French and the “Acquired Long QT Syndrome” pamphlet.
  • Dissemination of recent genetic and clinical findings concerning LQTS and related conditions.
  • Medical Examiner Contact Program.
  • Seminars and conferences for physicians and other health care professionals.
  • International SADS Conference: Preventing Unexpected Sudden Death in the Young

Public Awareness

  • Train volunteers to inform their local communities and provide extensive materials for distribution in the community and for working with the media.
  • Establish media relationships to promote awareness of unexplained sudden cardiac death in the young due to LQTS and other primary cardiac arrhythmia disorders.
  • Sponsor the Annual International SADS Awareness Month each year.

Advocacy and Research

  • Advocate for individuals struggling to find answers due to the unexplained death of a loved one.
  • Provide referral to and assistance with research projects.
  • Work with other organizations-nationally and internationally-to advocate for measures beneficial to families and patients (AEDs in community, etc.)

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