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I’m Alice Lara and I am President and CEO of the SADS Foundation. I’ve been with SADS for 22 years and have enjoyed meeting so many of you–hearing your stories, answering your questions, and, I hope, helping many of you on your journey living and thriving with a SADS condition.

I love reading (and, surprisingly to me, listening to) books–mainly mysteries. I’ve really enjoyed the “old” authors and also authors from different countries.

My 11-month-old puppy, Emilie, is a part of my family and my house might never be the same. I always say I don’t “exercise”–I just walk the dog.

Hi, I’m Genevie, the Family Support Director with the SADS Foundation. I’ve been in this role for about a year now, but I’m a longtime volunteer with SADS since I was diagnosed with Long QT Syndrome at 16 years old. I also have four kids who have Long QT.

Some of the things I’m in charge of at SADS are helping families with physician referrals, connecting families with each other, and answering questions that come up along the family’s SADS journey. I frequently talk to families to provide these resources one on one.

Three interesting things about me are I was once attacked by a giraffe, I live in Minnesota and I love to read historical fiction novels.

If you have any questions about your condition, you need a referral to an expert or would like to connect with somebody with your same condition, please contact me at [email protected].

Hi, I’m Regina, and I am the Assistant Family Support Director here at SADS.  I assist Genevie with family connection and provide resources and referrals when needed.  I found the SADS Foundation back in 2020 through my personal journey with ARVC when I was looking for a place to connect, share my story, and become more involved in research.  I have been a member of the ICD Support Group since its inception and have experienced the importance of connection with others who understand living with a chronic condition.

I have worked in healthcare and medical education for over 20 years and came to realize the general lack of awareness and education surrounding arrhythmia syndromes.  It wasn’t until I was diagnosed with ARVC at the age of 34 that I had ever heard of it!  I am grateful to SADS for their commitment to raising awareness and educating those living with SADS conditions and their families as well as health care providers.

I enjoy spending time with my husband and my two goldendoodles, Ilsa and Agatha.  My activities have changed since my diagnosis with ARVC, so most days you can find me taking slow walks with my dogs, practicing yoga, reading, or having friendly competitions with my husband over any number of word puzzles.  I also love to travel and have visited 15 countries (so far)!

If you need more information about your condition or a referral to an expert, or if you’d like to connect with someone living with a SADS condition and share your story please reach out to me at [email protected].

I’m Marcia Baker! I joined the SADS Foundation staff team in October 2018 as the Program Director, following a 30+ year career in association management with two other heart-related nonprofit national organizations – American Heart Association and Mended Hearts.

At SADS, I develop and implement educational programs (in-person conferences and webinars) for both healthcare professionals and families impacted by one of the SADS genetic heart arrhythmias. If you participated in or viewed any of our webinars, you saw my face introducing the speakers or moderating questions! Erin, our Tech Manager refers to me as “The Face of SADS.”

I’m honored to do this meaningful work with an incredible small staff team, along with academic and industry partners to further the SADS mission – dedicated to saving the lives of young people and their families genetically predisposed to sudden death arrhythmias.

I spend my leisure time sailing and singing or playing piano or guitar with my nonprofit women’s ensemble in Dallas. In 2016, I earned my USCG Master Captain’s license and teach sailing on my boat, “Two-Part Harmony” at Lake Whitney, Texas on weekends. I’m also part of a sailing race crew for a J30 sailboat – racing most Saturdays – year-round. I love the outdoors and spending time with my two rescue dogs, Willie and Waylon.

If you have a webinar topic suggestion, or want to be connected to a physician or another family affected with a SADS condition, please email me at [email protected].

Hi, my name is Jan and I’m the Development Director for the SADS Foundation. I’ve been here for 10 years and my job is to bring in the funding to make certain we can perform our mission of supporting families and saving young lives. This involves working with foundations, corporations, individuals, and volunteer fundraisers. I’m so blessed to be able to work with and for our SADS families!

Three things you might not know about me – I’m the only cat person on staff (but I love everyone’s dogs), I’m an avid hiker mountains or red rocks, and love to cook with herbs and vegetables from my garden.

If you’d like to give a gift or do a fundraiser, just reach out to me at [email protected].

I’m Erin Waite. I started at the SADS Foundation in 2018 as the Office Manager and have grown into the Technology and Administrative Director. I like to wear lots of hats here. I help the team organize our online programs, update our new website, mail out materials, and also arranged the SADS Live Programs. You may have talked to me when you call our support line too!

I am a nerd at heart and I love Marvel, Harry Potter, and anything Disney. I have two giant dogs (a lab and great dane) that I love to take on adventures on the weekend like fishing or camping with my husband.

If you have questions about our website, SADS Live, or want to order awareness materials you can email me at [email protected].

Hi, my name is Anna, and I’m the Communications Director for the SADS Foundation. I’ve been here for a little over two years, and I’m in charge of our social media, email, and direct mail communications.

Three things you might not know about me: I’m originally from the Midwest, I have a Border Collie named Bentley (who you sometimes will see on our social media!), and I love to do crosswords.

If you’d like to help us spread awareness, reach out to your local media, or tell your story, contact me at [email protected]!

My name’s Tia. I am the Communications Assistant at the SADS Foundation. I’ve only been working with SADS for a few months, but I have known about the Foundation for many, many years. I was diagnosed with Long QT when I was just 11 years old. And fast forward to many years later and I have three children and they also have Long QT.

I worked in cardiology for about eight years and I have always had a passion for cardiology. And it’s so wonderful meeting everybody who has a SADS condition as well – to listen to and relate to.
Three fun things about me are that I love mountain biking, Hawaii, and going to concerts.

If anyone wants to share their SADS journey with us at SADS, please contact me at [email protected].

In January 2023 We got the shocking news that our 10-year-old son had passed away four years earlier due to CPVT and that our older son and I have CPVT. We would never have learned of our rare genetic heart condition had it not been for one simple test – a rapid DNA sequencing test. This news came shortly after our 16-year-old son suffered a sudden cardiac arrest, received CPR for over two hours, was pronounced dead, and then came back to life five minutes later. Today, he is battling incomplete paraplegia and is in a wheelchair due to a lack of oxygen to his spine during CPR. Our son’s cardiology team is one of the few in the country that specialize in treating CPVT. They were first to tell us about SADS. Before long, I volunteered for SADS and shortly thereafter became an employee. This is not a job for me, but a passion to get others like me and my family the information, testing, and treatment they need before it’s too late. I’m committed to our SADS families and look forward to engaging with the community to understand your needs and wants for the future.

Hi! My name is Allie. In December of 2023, my family’s world was turned upside down when my 16 year old brother went into cardiac arrest. This led to him being diagnosed with CPVT as well as three other members of my family being diagnosed, myself included. During this time I relied heavily on the SADS social media platforms to understand this new condition that we were coming to terms with.  I am so happy to be a part of this foundation and the Communications team. The work of the SADS foundation and team are near and dear to my heart because of my own experiences.

If you feel the need to share your story or spread awareness you can contact me at [email protected].