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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.

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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.

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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 19, 2011

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February 19, 2011

In 1975 my ten year old brother began to faint at odd times. He would faint while we were all playing monopoly, he would faint when playing with the dog, he would faint when he got excited. In short, he fainted and we knew nothing about why he was doing it. He always woke up.

Then, he
started fainting and not waking up. Aid cars were called. We discovered that his heart was going into something valled ventricular fibrillation. He was defibrillated on a trip to Children's Hospital in Seattle.

At the hospital he was fainting when he was in the hospital bed. Wires were hooked up to him and they were checking his hear. They could see that his heart was doing weird stuff -- ventricular fibrillation -- but they could not tell us why.

The cardiologist hooked up an external pacemaker and my brother stabilized. But, the doctors did not know why he was having these problems. Finally, a resident came in with an article describing a newly discovered genetic problem called Romano-Ward syndrome that was associated with Long QT.

The cardiologist measured my brother's QT interval -- he actually used calipers -- and found a long QT.

The doctor inserted a pacemaker -- it went into my brother's abdomen because it was quite large -- and sent us all home.

But, our journey with Long QT was just starting. We were asked to all have ECGs and it was discovered that My dad, my sister and my new little brother -- less than a year old-- and myself all had Long QT.

Not much was know about the disease -- it was 1975 -- and we were told to watch for fainting. None of us had fainted except my brother and my dad had spent 21 years in the navy and served in Vietnam for a few years and even had a Purple Heart!

The doctors and our family reasoned that the rest of us would be OK. We were the first Long QT family the hospital had ever seen.

They were wrong but we would not know this for another 18 years.

In that time frame I climbed Mt Rainier, became a volunteer fire fighter- even taught advanced first aid and CPR -- and even responded to a call for help at Husky Stadium where I did CPR on an elderly man and rode in the aid car doing CPR because the crew was short handed. What an adrenaline rush!

I had lots more adrenaline rushes as I went into burning buildings, responded to aid calls, learned how to autocross -- a form of sanctioned car racing where you go through cones -- and did a lot of great things as a young adult.

In 1979 I went to college. My sister followed about a year later (I had graduated from High School in 1975 and went to college in 1979) and my sister had a great start to her college career until she started fainting.

She ended up getting a defibrillator inserted in 1981 or 1982 and the doctors started to think there was more to this Long QT thing.

We were asked to be part of a genetic study so that researchers could try and locate the gene causing our problem. Other people were being identified at Children's and Long QT was getting some attention. Teenagers had been dying unexpectedly and autopsies were not showing doctors why these otherwise normal children were dying. The common thread was unexpected fainting.

I was married in 1982 and we had a daughter in 1984. Genetic studies were ongoing and researchers had learned about a mutation that resulted in a "potassium ion channel polarization" problem and they labeled us Long QT2. Tests showed my first daughter did not have the defective gene.

We had a second daughter in 1989 and tests showed she had the gene. Research was progressing and more info was being learned about this disease. Let's go back to my brother who started all of this -- he was doing great..... and living life even though he had also developed diabetes. My younger brother, also diabetic was also doing great and was being seen regularly at Children's. Both brothers had been put on a drug for Long QT -- a form of beta blocker.

So, we fast forward to 1993, my brothers, sister, dad, and youngest daughter are doing great. My daughter is five years old and taking nadolol -- a beta blocker -- and she is doing fine. Research showed that Long QT affects young people between the ages of 13 and 20 the most and sudden death occurs unexpectedly.

My youngest brother was 18, getting ready to graduste from High school, driving into a park with his girl friend when he saw a car/motorcycle accident. He started to get out of the car to go help out at the scene and collapsed. He had fainted.

Nobody did CPR, Aid car came and took him to Children's, the aid crew defibrillated him and got him back on the way to the hospital. At the hospital my brother's heart remained stable but he had gone into a coma.

We learned that the lack of CPR and the ventricular fibrillation had caused his brain to go without oxygen for a period of time. He was placed on a ventilator and tests were done. We learned that his brain had died. My little brother was declared dead.

We were all devastated. How could this have happened? Was this Long QT thing this real and this dangerous? The only good thing to happen was that my brother was able to be an organ donor and I believe he helped about a dozen people.

Eighteen months later the Washington State Patrol found my next youngest brother dead in his truck on the side of the road. We believe he felt something starting and was able to pull over. Our family had lost two young people to Long QT. Sudden death by Long QT was real!

My sister -- the only one of us to have a defibrillator -- had several attacks and been automatically defibrillated and continued living.

I did not have a defibrillator, my dad and daughter also were unprotected. My daughter continued to take beta blockers and be checked every six months on a treadmill to see if the beta blocker was working.

in 2001 my dad got a defibrillator. In 2002 my daughter got a defibrillator and I got mine a year later. We have all had them replaced but my daughter has had four surgeries to replace defective leads, a recalled defibrillator and survived long QT with no problems until December of 2010 when she woke from a bad dream and had a cardiac arrest caused by ventricular fibrillation.

Her defibrillator saved her life. At the ER, she had texted me and said she was Ok but in the hospital, my electro physiologist checked her out, got her permission to call me and flatly said "this would be a different story if she did not have a defibrillator."

My daughter came to brunch at my place and has almost recovered from the trauma of her cardiac arrest. She has had some anxiety attacks -- who wouldn't? -- and is doing great.

This is a long story but has a summary. Research into Long QT has saved lives. The SADS organization has learned that proper care with beta blockers, defibrillators and education saves lives. While our family has lost two young people to this disease we were also a family that started a long history of research.

The SADS organization does great work and should be supported.

The Great!

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

being benefited by the research and having a daughter live because she had a defibrillator.

Ways to make it better...

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

help them get more money to extend their reach to more people.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

original study member and affected by Long QT.

What, if any, change in your life has this group encouraged?

Be active and LIVE with Long QT.

When was your last experience with this nonprofit?

2011

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

My 15 year old daughter died suddenly while playing softball. Loma Linda Dr. Marc Platt Chief of cardology at the time studied 3 families who's children had also died suddenly during that time. Pesticides being used in the community were suspected in my daughters case. I am very sad that SADD does not address this FACT even though it is very well documented. Do any of their donations come from CHEMICAL companies. How many ATHELETS die each year on contaminated Fields. My daughters case has been documented since 1998. Look up ORGANOPHOSPATES and make your own conclusion. As for the cause of death of the other children, out of respect for the families I will only comment about my daughters, However I do know my facts are correct.

The Great!

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

ChrissyG foundation

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

My 15 year old daughter died suddenly while playing softball. Loma Linda Dr. Marc Platt Chief of cardology at the time studied 3 families who's children had also died suddenly during that time. Pesticides being used in the community were suspected in my daughters case. I am very sad that SADD does not address this FACT even though it is very well documented. Do any of their donations come from CHEMICAL companies. How many ATHELETS die each year on contaminated Fields. My daughters case has been documented since 1998. Look up ORGANOPHOSPATES and make your own conclusion. As for the cause of death of the other children, out of respect for the families I will only comment about my daughters, However I do know my facts are correct.

The Great!

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

ChrissyG foundation

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

February 17, 2011

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February 17, 2011

SADS- terrible name, great cause, wonderful people-- provides information that is life-saving (literally). Hardly anyone knows about arrhythmia conditions, even doctors are astoundingly ignorant. And people with the condition have only piecemeal information. so when someone is struck down, everyone says, oh, if I had only known, why didn't anyone tell us about this? This small grass-roots organization is the only one I know of that is trying to get the word out, to save lives. I attended a workshop after I survived a mild attack of arrhthmia and was diagnosed with one of the rarer forms--most people don't live thru it. I feel like I was spared so I could help my extended family who are now able to take steps to prevent dying from this--but I did not know what to do until SADS laid it all out, how to approach them and what needed to be done. This is such a hidden danger, and SADS is about the only thing exposing it so we can deal with it.

The Great!

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

workshop

Ways to make it better...

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

Make it GROW

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

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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