I just lost my nephew at the age of 18 due to arrhythmia that was diagnosed recently, and was searching to see how we can contribute in bringing awareness to youth who otherwise may look perfectly healthy. I'm glad to find an organization with this mission, and would like to help them expand on their mission.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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!!
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.
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;
SADS is an amazing organization!!! etc etc etc etc etc etc etc etc etc etc etc etc etc etc etc