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June 15, 2010

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June 15, 2010

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.

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I've personally experienced the results of this organization in...

reading the tremendous research on their website and being able to educate myself and others, meeting other survivors who were helped by the SADS Foundation, and being able to access a whole program of community resources that can be shared.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 14, 2010

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June 14, 2010

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.

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I've personally experienced the results of this organization in...

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 11, 2010

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June 11, 2010

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.

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I've personally experienced the results of this organization in...

See review.

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What I've enjoyed the most about my experience with this nonprofit is...

the true sense that they are a part of your own family; that they are there to support you in any way you need them.

The kinds of staff and volunteers that I met were...

committed and concerned even though none of them have experienced a loss to SADS related conditions.

If this organization had 10 million bucks, it could...

decreased the number of unnecessary deaths caused by underlying SADS conditions. Most people with SADS conditions have warning signs. We need to educate more heathcare providers to these warning signs and how to diagnose SADS conditions correctly.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 10, 2010

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June 10, 2010

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.

The Great!

I've personally experienced the results of this organization in...

SADS helped us understand our sons illness which claimed his life after doctors & specialists failed to diagnose the problem. We now participate in meetings and fundraisers to help them save lives of others.i

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 8, 2010

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June 8, 2010

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!!

The Great!

I've personally experienced the results of this organization in...

raising awareness. SADS is incredibly helpful and successful publicizing our annual event. I have also had results in connecting with other "patients" or affected individuals.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 8, 2010

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June 8, 2010

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.

The Great!

I've personally experienced the results of this organization in...

I have seen the impact this group has in working with families who have lost loved ones and now have an awareness that others in their families may have the syndrome. This groups exhibits a gereat deal of care and understanding.

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What I've enjoyed the most about my experience with this nonprofit is...

Energy of the staff and volunteers and commitment to their goals.

The kinds of staff and volunteers that I met were...

Excellant and very aware of the impact they can have on the families who may be able to prevent something traumatic from happening. Prevention is far better than finding out after someone dies.

If this organization had 10 million bucks, it could...

Spend less time fundraising and more time creating the education programs it needs to train people to watch for the signs and symptoms.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

June 8, 2010

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June 8, 2010

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.

The Great!

I've personally experienced the results of this organization in...

I have watched this organziation educate the medical community and families with greater awareness and support for these conditions. This is a small staffed well run organization which I am happy to donate to so they can continue to make a difference

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 8, 2010

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June 8, 2010

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.

The Great!

I've personally experienced the results of this organization in...

My sister-in-law, mother-in-law and niece all live with a heart condition which SADS provides specific education and research for. We have also found comfort with SADS in sharing the story of the loss of my wife and their sister and daughter.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 5, 2010

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June 5, 2010

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;

The Great!

I've personally experienced the results of this organization in...

We have frequent contact with many of the staff members, have met with them at regional SADS conferneces, have ongoing communication online and had the pleasure of thier attendance at our last event in the Albany NY area;

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 4, 2010

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June 4, 2010

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.

The Great!

I've personally experienced the results of this organization in...

Lots of support and love. Plus all the materials I need to help spread the word about Long QT and the SADS Foundation.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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