The SADS Foundation

Being a parent is hard enough, but when you add your child being diagnosed with a rare health condition, it makes things a little more difficult. Camila is a mother whose child has been diagnosed with Brugada Syndrome. Camila talked in a recent episode of SADS Live about how she told her daughter about her heart condition, how they navigated the diagnosis process, remembering to take care of yourself as a parent, and much more. If you are a a parent of a child or children with a SADS condition, you will want to listen to this SADS Live episode. https://lnkd.in/gE3N2BJ5 ??? #SADS #SCA #SuddenCardiacArrestAwareness #childrenwithbrugada #parentsofSADS #SADScommunity #parentsof CPVT #parentsofLongQT #parentsofShortQT #parentsofARVC

The SADS Utah Basketball Meet-up was a night to remember! This was a great opportunity to meet our Utah-based staff – as well as other local families with SADS conditions. Cheers to an exciting game and raising awareness for a cause close to our hearts! ??? #LQTS #CPVT #Brugada #ARVC #ARVD #SuddenCardiacArrest #HeartFailure #ICD#SADSAwareness #UofUBasketball

The Andy Golden Memorial Fund - generously established by his wife and daughter through a $50,000 endowment to the SADS Foundation - continues a legacy of support and research for rare heart conditions. Andy Golden, Ph.D. was a Senior Investigator and Section Chief with the National Institutes of Health (NIH), where he is remembered as a brilliant scientist and mentor. Andy was instrumental in the advancement of research for Timothy Syndrome (TS), a rare genetic condition supported by SADS that affects a child’s heart, nervous, and immune systems. He drew inspiration from the TS parents and kids he met at the SADS conference and went on to successfully model a TS worm in his lab to improve the symptoms of TS kids. “Andy was a natural leader among our families - it was particularly evident by his popularity at our conferences,” says Alice Lara, RN, Executive Director of the SADS Foundation. “It is in keeping with Andy’s many generous donations to SADS over the years, that Alexandra and Zoe created this fund ensuring the tremendous generosity Andy showed in donations, his time, knowledge, and energy will continue to be felt by families even as his physical presence is terribly missed.” Read our press release at https://lnkd.in/gaRBEFbT.

One hour until our SADS Live Q & A Session with our favorite Dr. Ackerman! Click the link in below or head to our Facebook page to watch it. https://lnkd.in/g8GKf3dW ??? #SADS #SCA #SuddenCardiacArrestAwareness

Join us for our free Family Seminar in New York City, NY in partnership with NYU Langone Health to ask local medical experts questions and get to know other families with inherited heart conditions! Join us in NYU on Saturday morning, May 31. Learn more and register for this FREE in-person family seminar at https://lnkd.in/gRucvYkT. ??? #LQTS #CPVT #Brugada #ARVC #ARVD #SuddenCardiacArrest #HeartFailure #ICD

In May of 2020, Elizabeth’s close friend passed away suddenly and unexpectedly. She tried to think of a way to support his family after this tragic loss – and wanted to give them a gift that didn’t involve food or flowers, since both are temporary. That’s when Elizabeth and her family started TreebuteCo. “Remembering our family’s tradition of planting trees for loved ones in our yards throughout the years, the power and symbolism of a living, lasting tree deeply resonated with our need to provide something more enduring,” she says. Elizabeth connected with Martha, a landscape designer, through a mutual friend. Together, they started the Trees with Heart program in 2022: a collaboration bewteen Treebute and Martha’s family selling beautiful Eastern Redbud trees to benefit the SADS Foundation & the Ollie Hinkle Heart Foundation. Martha’s middle daughter, Anna Scott – who is now 21 – had recently been diagnosed with Long QT Syndrome. Treebute’s purpose is grounded in providing a simple yet profound way for people to honor loved ones through trees that they see grow and thrive for generations. Learn more about this incredible program at https://lnkd.in/gmBcgrr2. ??? #longqtstrong #lqtsyndrome #longqt #longqtsyndromeawareness

Here are some SADS Memes to brighten up the middle of your week. ??? #SADS #SCA #SuddenCardiacArrestAwareness #childrenwithbrugada #parentsofSADS #SADScommunity #parentsof CPVT #parentsofLongQT #parentsofShortQT #parentsofARVC

Applications Open: 2025 Allied Professional and Genetic Counselor Research Awards! These awards (one for genetic counselors, one for allied health professionals) encourage genetic counselors and allied health professionals to conduct outstanding research in cardiac channelopathies and cardiomyopathies. The work should be scientific, innovative, informative, and practical. The topic of the research must be related to inherited channelopathies, inherited cardiomyopathies, or sudden death. It should impact patient care, advocacy, education, research, community awareness, or increase awareness of a new aspect of the disease. The deadline is April 10. Learn more and apply at https://lnkd.in/gNjVAyQQ.

A huge THANKS to Grace, who held her third fundraiser in memory of Ruben Rodriguez, to raise funds and awareness about Brugada Syndrome, in February ?? They raised over $7,000 to help support SADS' mission! We're also super grateful for the Tap & Growler Bar, which helps support this fundraiser each year. "Ruben was a very loving and caring young man with a great big smile and even bigger heart. He loved his family, friends, his precious cat Pyra and sports. There was nothing he wouldn’t do for the people he loved," says Grace. Learn more about Grace and Ruben's story, and Grace's fundraiser in memory of Ruben, at https://lnkd.in/gqZEz_ed.

Check out our agenda for our FREE in-person seminar in Nashville this March! We're bringing together local families, experts from Vanderbilt, and SADS staff for a day-long regional educational seminar. Kids and teens are welcome to join, too - and have their own special agenda planned! Learn more, and register, at https://lnkd.in/gnp94tjw.