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October 16, 2012

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1 previous review
June 27, 2012

On September 29, 2009 I unexpectedly lost my husband and my daughter lost her father exactly 1 month after her 3rd birthday. We soon learned that Wayne had an undiagnosed genetic heart condition calle... more

October 16, 2012

The SADS Foundation has been an integral part of my healing from the unexpected loss of my husband and the care of my daughter. They are extremely dedicated to the individuals and families they support, and their passion for their cause, saving lives and supporting survivors is boundless. We appreciate everything they have done for our family, and they have inspired us to work hard for the cause & community as well.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 27, 2012

On September 29, 2009 I unexpectedly lost my husband and my daughter lost her father exactly 1 month after her 3rd birthday. We soon learned that Wayne had an undiagnosed genetic heart condition called Long QT Syndrome. Since losing him, our family has learned that other family members have Long QT as well, including our daughter, Lily. And, sadly, we learned that Wayne's death was preventable.

We are so fortunate to be connected with the SADS Foundation, as they have been a compassionate source of support and expertise in the field of genetic heart arrhythmia syndromes. Not only do I feel comfortable with the information they give us, but I feel like I have understanding friends to whom I can simply talk to when in sorrow or fear. As a way to give back and further advance their efforts, I've chosen to volunteer on behalf of the Foundation. Each year we host a celebration of life in Wayne's memory in an effort to raise critical funding and awareness for Long QT Syndrome and other SADS conditions. These events have been a tremendous source of personal healing, as well as raising significant funding & awareness. My life & the way I've dealt with the loss of my husband is dramatically different in a positive way as a result of the SADS Foundation and their incredible staff.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 28, 2012

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June 28, 2012

I became involved, as a volunteer, with the SADS Foundation in 2005, following my sister's death. I know first-hand how devastating sudden cardiac death is for a family, and the frustrations of being unaware of warning signs. SADS goal to spread awareness for diseases like Long QT, that killed my sister and with which several members of my family and myself are affected, is also a lifelong mission of mine. Alice, Laura, and the whole team at SADS have made volunteers feel like part of the family, and given us a chance to help make a difference in a fight that is so close to our hearts.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 27, 2012

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June 27, 2012

For years my husband had no idea what was wrong with him. It wasn't until he was about 24 he was finally diagnosed. Then we found out about the SADS foundation and was overwhelmed with a wealth of information. Since that time, I have done all I can as a volunteer to help and get information out to as many people as I can.

The Great!

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

a wealth of information. I have been able to use their resources and to share their resources.

Ways to make it better...

If I had to make changes to this organization, I would...

have area meetings for volunteers

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 27, 2012

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June 27, 2012

When my son passed away from fainting spells that went undiagnosed by specialist after specialist, it was only after his death that we learned of www.SADS.org. They were kind enough to respond to our need for answers as to WHY he passed away. They referred us to doctors who reviewed my sons medical records gratis and confirmed that he was afflicted with SADS, and that if he had been diagnosed correctly he would still be alive today. Because their wonderful responsive team was able to help us so much to find closure, our family has joined the cause as volunteers to help spread the word throughout the medical and acedemic community, to educate, inform, and help to save others lives. We take great joy in knowing that we are helping to support them in saving others from this horrible life taking affliction.

The Great!

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

so many ways. They work so hard to give and help others. They have offered counseling, insight, understanding and an opportunity to get involved in fund raising, awareness events, and meetings with families trying to learn to live with the affliction or come to grips with their loss.

Ways to make it better...

If I had to make changes to this organization, I would...

help them by giving myself to them full time.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

What one change could this group make that would improve your volunteer experience?

NA

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

It has been profound

How did this volunteer experience make you feel?

That we can all make a difference in saving lives. Because of them, I speak to people every week who want to hear about my personal experience. Many of them know someone who is passing out and we are able to refer them to SADS and potentailly save their lives.

June 27, 2012

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June 27, 2012

I run a website with over 550 members; most of them are parents whose children have a rare and potentially fatal heart condition called Long QT Syndrome. The people at SADS have been a key element in helping parents find resources, given guidence, assisted in working with insurance companies, helped people find doctors - the list goes on an on. They have even helped our members get questions answered by some of the top doctors in the field, on video, which we can play on the site. They have gone above and beyond my wildest expectations. I can truly say without reservation many, many families have greatly benefitted from their help.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 27, 2012

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June 27, 2012

My name is Kristen Prosser and Im aware of SADS due to a loss of one of my husbands friends Wayne Sawyer a few years ago. Since then I have become aware of this silent killer that no one knows about. LAURA M WALL has been an amazing contact with helping me figure out how my husband and I can raise awareness. Mark Prosser is now CLIMBING TO CONQUER and just doing anything we can to spread the word. I love this foundation so much and a big Thank you To Shannon Kiss who Lost Wayne and has volunteered and made us all want to care a little more about things we don't know about.

Photos

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

February 18, 2011

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February 18, 2011

Why we do it?
In 1994, while visiting Disneyland, my wife Sally collapsed and for the next 28 minutes she was without her own working heart and lungs. I called 9-11 and managed to give her CPR for the next 17 minutes until the paramedics arrived and transported her to the ER. All the while, our
two young daughters had to watch the whole event unfold in front of them. At the ER, the doctors were able to get her heart restarted in the 28th minute. Sally remained in a coma for the next 3 days. They said she wouldn't make it through the night and gave her a 10% chance of surviving. We almost lost her 3 more times that first night, but she kept hanging on. She was transferred to UC Irvine and had a cardiac defibrillator implanted. Five weeks later she finally went home. Sally has spent years undergoing therapy for her brain injury (due to lack of oxygen during her collapse).Sally has "Long QT Syndrome". Ever since this tragic event unfolded, we have become involved with the SADS Foundation: doing any and everything we can to help.
Thank You, Bill Layton

The Great!

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

They are wonderful! Thank You to all!

Ways to make it better...

If I had to make changes to this organization, I would...

Get them more funding and exposur

February 18, 2011

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February 18, 2011

When my middle son, Cache, was born almost 6 years ago, we found out he had a rare genetic heart condition called Long QT syndrome. Of course the first thing we wanted was answers. That is when I stubble across the SADS Foundation’s web site. They had so much information and also mailed me information as well. They have been great supporters over the years; as we have found out my brother, his children, myself, and my children also have this scary syndrome. We are lucky to have found out, as many are not as blessed as us. SADS Foundation provides great support for all families affect by SADS conditions. As of last year, we celebrate Cache’s birthday by helping raise awareness and fundraising so they may help save others from tragedies and support others.

The Great!

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

support to our family and others

Ways to make it better...

If I had to make changes to this organization, I would...

none

February 17, 2011

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February 17, 2011

In the early '90s, Long QT Syndrome took the lives of two of my uncles. Today my grandpa, aunt, dad and myself live full and normal lives. Though hardly anyone has heard the name, let alone fully understands the potential severity of the condition, Long QT and other SADS conditions are responsible for far too many deaths. On October 10, 2010, I went into cardiac arrest due to ventricular fibrillation. Within 15 seconds, my implanted defibrillator detected the rhythm and sent a corrective shock to my heart. It is safe to say that without an ICD and how far research has come, I probably wouldn't be here today. Although I have always understood the condition, it has never been so real to me, nor have I ever been quite as thankful for organizations such as the SADS Foundation, as I am now. The SADS Foundation is full of wonderful people who are striving to continue to spread awareness of SADS conditions. It reminds me that, even through hard times, we need to reach out to others and think outside ourselves.

Photos

The Great!

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

The SADS Foundation has been extremely helpful to me and my family since it was founded. I have been able to be connected to other people in similar situations during harder times. They have also allowed me to help other spread awareness to other people. The interconnectivity of the organization is great.

Ways to make it better...

If I had to make changes to this organization, I would...

While the SADS Foundation is wonderful, I wish there were offices in other parts of the country. I would especially love to be able to be more involved with a branch of SADS in the Northwest.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

June 18, 2010

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June 18, 2010

On April 7, 2009 my life was changed forever. That is the day my 3 yr. old daughter, "George" (Cecilia Kay Balma), just stopped. It was the middle of the afternoon, on a regular day, my 5 yr. old son said George was pretending to be asleep on the kitchen floor. My two other daughters and I went to 'wake George up'. We use to be a very playful family. It only took a second for my oldest daughter and I to realize something was wrong. My 10 yr. old called 911. I held my child and talked to the emergency operator. When we reached the hospital, there was already a priest in her room waiting for us. I didn't look at him. Within seconds my husband was in the room. We watched, helplessly, while the doctors tried to save her life. They were unsuccessful. No one could tell me what happened to my baby. Not 911, not the paramedics, not the doctor or hospital. It took the coroner to diagnose my daughter. Death by Sudden Cardiac Arrest due to an undiagnosed heart condition. I couldn't understand how something like this could happen to my family, to my child. I wanted to know something, anything. The coroner diagnosed my daughter. She had right ventricular displasia, a form of SADS. I couldn't understand why I didn't know and began a downward spiral into a horrible depression. During the days I spent locked in my house I began to research this condition. The more I learned the angrier I became. I started very slow, asking for a small amount of literature at first. The reaction I got from the community has lit a spark. No one knows. I went to the Health Dept., W.I.C, and Medicaid Office. I hung posters in the library, courthouse, and grocery stores. I just kept telling anyone who would listen. I am proud to say that I have a date with the School Board on 6/21 to ask that they change the county wide physical forms. I will never stop telling. My family will never stop telling. SADS helped me find a way to be a mother to my child in Heaven. While I could not save George, together we can save someone else's Angel.

The Great!

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

I have experienced the results of this organization in so many ways. Mostly when I see the pride in my children's eyes when I update them on my activities.

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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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