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SADS (Sudden Arrhythmia Death Syndromes) Foundation

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Nonprofit Overview

Causes: Health, Heart & Circulatory System Diseases & Disorders, Specifically Named Diseases Research

Mission: Your child or a young person you know may be at risk for sudden cardiac death due to an inherited condition. He or she will appear healthy, and in most cases, you will have absolutely no idea that something might be wrong. Once diagnosed, these conditions are treatable. Without diagnosis and treatment, they can be fatal. Nearly 4,000 children die each year due to undetected cardiac arrhythmias. One in 2,500 of them are at risk of a sudden cardiac arrest. These deaths can be prevented if more people are aware of the SADS warning signs. The Sudden Arrhythmia Death Syndromes (SADS) Foundation is dedicated to saving the lives and supporting the families of young people genetically predisposed to sudden death due to cardiac arrhythmias.

Results: We are making great strides raising awareness of SADS. More people are learning the warning signs, and contacting the SADS Foundation if they think their child may possibly be affected. We applaud this effort, and hope that soon - every person will know what SADS stands for, what the warning signs are, and what to do.

Target demographics: Children, young people, and families

Geographic areas served: World-wide

Programs: The sads foundation is dedicated to providing information, assistance and hope related to this disease. In fulfilling this mission, the organization has the following goals: education: to educate health care providers and the lay public to promote early diagnosis and treatment. Patient services: to serve as a physician referral resource and to provide information to physicians who care for patients with cardiac arrhythmias. Support services: to assist all those affected by the sudden death of a young loved one, or who have been diagnosed with a cardiac arrhythmia by providing informational materials, facilitating support groups, and maintaining an active networking program. Public awareness: to inform families, physicians, and communities about the genetic cardiac arrhythmias in the young, and thereby prevent sudden cardiac death in young people. Research: to encourage research on genetic cardiovascular diseases predisposing the young to sudden death.

Community Stories

32 Stories from Volunteers, Donors & Supporters

9

Volunteer

Rating: 5

At 17-years-old, I was diagnosed with a life-threatening heart condition called LongQT Syndrome. At the time, there was little research and support with regards to my condition and others like it. I found the SADS Foundation online, and they truly gave me the education and motivation to get through the most difficult time in my life. Working with them the past 10 years has been extraordinary, especially with witnessing the invaluable gifts they are able to give to heart survivors like myself.

9

Client Served

Rating: 5

I first learned about the SADS Foundation after my son’s death. Before his unexpected passing last August I had never heard of sudden heart arrhythmia. One day while at work, feeling helpless, sad and angry, I goggled CVPT, one of the affiliated illnesses. Of course, there was a good amount of online information to go through. However, the SADS website was one of the few sites that stayed with me during my many weeks of research. Their site was not only easy to maneuver and had a very professional appearance; it also had a massive amount of great information, including links taking me to other reputable and related sites. I absolutely loved the innovation of their Patience & Family Support page, especially the Healing Wall. It was obvious that everything was very well thought out. The website was just a small reflection of the great services I received from the organization since my first contact. A few months ago I made one phone call and the outreach from this organization has been phenomenal. The encouragement, compassion, and support I’ve received verbally and through the actions of the foundation’s staff has been top notch. I feel as if they truly understand the difficulty me and my family are experiencing and they are there for us. I receive a thinking of you phone call or an email at least once a week. Each contact ends with words of encouragement and inspiration. I’ve also received a call from a member of their board as well as two or three other supportive parents the foundation put in contact with me. In the short period of time since I’ve been in touch with the foundation, they have created a memorial page for my son, send me results of donations directed to his page through weekly reports, and have volunteered to attend a celebration of life event I am having for my son later this summer. As a result of their support, I have also found a new and important mission while refocusing most of my grief: working on a way to honor my son by getting out the word regarding SADS as well as this great organization. I know I would have eventually found a way to work through my grief. However, I could not have re-focused this level of organized and positive energy to such a wonderful cause if it were not for the support of this organization and its staff.

9

Client Served

Rating: 5

We lost our son (age 15) to Long QT in the summer of 1991, before the SADS Foundation was formally started. Shortly thereafter, our other two children were also diagnosed with Long QT. At that time Dr Vincent, was working tirelessly to make sense of the unexplained deaths that were occurring in young people. Blood samples were sent to Dr Vincent to be added to his research. It was Dr Vincent who talked with us and gave us comfort that we would find the underlying reason for this condition. Here we are 19 years later. Answers and good treatment modalities are here. I have supported the SADS Foundation from the beginning; I have seen it grow from a vision to a reality. SADS works everyday to give support to families and to educate medical providers at all levels. SADS is a presence at most, if not all, major Cardiology meeting. SADS continues to work with other specialties, e.g medical examiners, to get the word out about the possibility of this underlying cardiac condition as the cause of unexplained deaths in children and young people and young adults. The work SADS does has saved the lives of many sibling and other family members.

9

Donor

Rating: 5

SADS is an amazing organization committed to saving the lives of those affected by the variety of heart arrythmia conditions. They work dilligently to educate doctors, schools, and the general public on how to detect warning signs which claims the lives of many adults and youth; particularly young athletes. It's amazing that in this day and age many doctors miss the signs of SADS conditions, because they simply do not know what to look for. By supporting SADS, they are able to grow and continue to teach those that have the power to help save lifes.

7

Volunteer

Rating: 5

SADS is a fantastic organization that deserves wider recognition. The incredibly dedicated staff are unbelievably supportive of volunteers. This is not a Monday-Friday organization. Laura, SADS VP of Marketing, flies around the country to support volunteer fundraising events, raise the profile of the event, and show SADS appreciation for volunteers' efforts. The importance of the organization's mission is obvious. They are Saving Lives!!

8

Volunteer

Rating: 5

I have worked with the SADS organization for almost 4 years now. This will be the 4th event I have done with them. In the time I have worked with this group, I have seen the organization grow from something smaller to something larger. This growth has only increased their abilities to do what they say they are going to do. Raise awareness in the medical communities, educational facilities and around the communities who are impacted by this syndrome. Getting AED's out to critical places like schools and pools was the initial push, but educating doctors who give sports physicals and cardiologists has also been important. Harder, but critical to creating the awareness we need to not ignore critical signs. I have seen the group actively try to lower operating costs and manage the dollars they get as effectively as possible. I like to see this in Non profits because so many times I see abuse. Laura and the SADS group are careful on how they spend the dollars they get and if possible get matches and double or triple the dollars they get from the public through matches and grants. I hope to be involved with this group for some time and are grateful that the time I spend with them increases their ability to raise funds to meet their goals.

8

Client Served

Rating: 5

Three year ago we learned our daughter had a serious heart arrhythmia condition called LQTS1. The SADS Foundation was tremendous and instrumental in providing us with education and knowledge on this condition. We receive their monthly newsletter keeping us up to date on information. They are always available to answer any questions we have with a live voice during business hours. We do not know where we would be without their continuous support and education.

6

Donor

Rating: 5

My wife died of Prolonged QT (SADS) in 1998. For the last 3 years I have helped organize a fun run event and donate all proceeds to the SADS Foundation. All of the staff at the SADS Foundation have been very helfpful and provided great support so that we could have a successfull event.

6

Volunteer

Rating: 5

We were introduced to SADS after losing our daughter Christie at age 25 in 2005 to sudden arrhythmia death. We have found them to be helpful, caring, efficient and very supprotive to afmailies who have lost someone and to those that were fortunate enough to survive an arrhythmia episode but now live with the disease;

6

General Member of the Public

Rating: 5

I lost my youngest granddaughter on November 22, 2009. She had been treated for seizures for years. It was not until one horrible day we found out that her problem was Long QT. A gene problem that had been passed on from me to my daughter to Abbey. Our pain is so great we can hardly function. But because Abbey was such a giving and loving little girl we had to do something. Laura and all the people a SADS has been great. We have gotten so much love and support for everyone. We are always thinking of ways to raise money to better serve the organization and keep Abbey's memory alive. We are just a few, but that is all it takes. One small step after another. Laura sent me a packet of information to deliver to all the surrounding schools. Awareness if vital. Everyone must understand how important the work that SADS is doing and support in the smallest of ways. Small donations are so welcomed. One person giving $1.00 and spread the word, then another person can give $1.00. Pretty soon we could raise thousands. It is that simple. I am and will always be a strong supporter of SADS Foundation.

12

Volunteer

Rating: 5

SADS is an amazing organization!!! etc etc etc etc etc etc etc etc etc etc etc etc etc etc etc