EP Update

SADS Foundation: Unprecedented Times Call for Unexplored Changes

Jan Schiller, Director of Development & Marketing, Marcia Baker, MS Ed, Program Director, and Alice Lara, RN, BSN, CEO

Sudden Arrhythmia Death Syndromes (SADS) Foundation 

Salt Lake City, Utah

Jan Schiller, Director of Development & Marketing, Marcia Baker, MS Ed, Program Director, and Alice Lara, RN, BSN, CEO

Sudden Arrhythmia Death Syndromes (SADS) Foundation 

Salt Lake City, Utah

Leading the Way to Save Lives

As the premier nonprofit organization for SADS conditions (including long QT syndrome, catecholaminergic polymorphic ventricular tachycardia [CPVT], Brugada syndrome (BrS), arrhythmogenic right ventricular dysplasia/cardiomyopathy [ARVD/C], Wolff-Parkinson-White, Timothy syndrome, short QT syndrome, and genetic atrial fibrillation), the SADS Foundation leads the way in education, research, and advocacy for families at risk for genetic cardiac arrhythmias. With the commitment of researchers, medical professionals, and families, our vision is to prevent the untimely death of young people through family support and empowerment, community awareness, cutting-edge medical intervention, and innovative research. Our goals have remained the same since we were established in 1991: 

  • Family support: Provide information/education, resources, and support to assist patients and their families to make informed medical decisions and to live with the challenges of these conditions; 
  • Education for health professionals: Facilitate early diagnosis and treatment of heart rhythm abnormalities by ensuring that health care providers have all available current and relevant information; 
  • Advocacy/research: Encourage increased arrhythmia research and nondiscriminatory treatment and efforts that will improve the quality of life for patients with heart rhythm abnormalities;
  • Awareness/prevention: Increase the general public’s knowledge of the warning signs of heart rhythm abnormalities that can cause sudden death in the young.

The SADS Foundation promotes increased medical research, develops and disseminates information, and initiates programs to assist children, parents, and families affected by sudden arrhythmia syndromes. The values of passion and compassion are the underlying forces that motivate SADS families, researchers, medical professionals, board members, and staff members to fulfill our mission and goals.

SADS COVID-19 Hub: Proactive Approaches Bring Results

The SADS Foundation enthusiastically began 2020 with plans to advance and expand our four core service areas of Awareness and Prevention, Patient and Family Support, Medical Education, and Advocacy and Research, as well as to convene the 13th International SADS Foundation Conference to be held in Houston, Texas. Everything was moving along successfully when the pandemic put the nation in lockdown. Conferences, meetings, and events were cancelled. Adults began to work remotely from home. Kids and teens began to attend school remotely from home. Everyone began to face an unprecedented time filled with uncertainties unknown in our lifetime. 

But now more than ever, SADS families and the medical professionals who take care of them need the support and resources of the SADS Foundation. Staff members have responded by exploring and developing new ways to continue to provide our critical services while also developing new guidance about SADS and COVID-19. 

Serving patients and families with inherited arrhythmias is our primary goal. From newly diagnosed families to those diagnosed years ago, and from pregnant women and their babies to women entering menopause, the SADS Foundation provides support, education, resources, and networking to enable our members to live and thrive with their SADS condition. Helping a family through the near-loss or death of a loved one is another critical support function that we provide. We have continued this critical support without interruption throughout the pandemic. This support includes the Family Support Helpline, individual email support and phone calls to provide specific education about their SADS condition, answers to genetic testing questions, physician referrals, assistance with insurance questions, school concerns for their children, etc. We educate families so that they are able to make the most informed decisions and actively take part in their medical care and the medical care of their children.

Because of the current situation without a known end, our SADS patients and families have been particularly anxious about their risk and what to do to stay safe. They initially had many questions about how COVID-19 affects individuals with a SADS condition and how specific treatments might affect an individual with a SADS condition. Families also have wanted to know what is safe to do in this environment. Is it safe to go to the grocery store? Is it safe to go on vacation? Is it safe to send the kids back to school? We continue to address these concerns through a variety of programs that can be found on our SADS COVID-19 Hub (StopSADS.org).

The most far-reaching program is the weekly Facebook Live Events hosted by Michael Ackerman, MD, PhD. These weekly programs are a place where families may ask their questions and receive answers about SADS conditions and COVID-19. To date, 22 episodes have been completed and have garnered more than 75,000 views. We have been honored with the appearances of 19 international SADS experts as guests, including Elijah Behr, MD; Charles Berul, MD; Georgia Brugada, MD; Hugh Calkins, MD; Susan Etheridge, MD; Robert Hamilton, MD; Andrew Krahn, MD; Silvia Priori, MD; Stacey Rizza, MD; Peter Schwartz, MD; Chris Semsarian, MD; Shubhayan Sanatani, MD; Maully Shah, MBBS; Paul Thornton, MD; Arthur Wilde, MD; Ray Woosley, MD, PhD; Richard Lamphier, RN; Brittney Murray, CGC; and Katherine Timothy. Each episode has been recorded and is accessible at the SADS COVID-19 Hub. Other resources found on the SADS COVID-19 Hub include the following:

  • FAQs on COVID-19 and SADS conditions;
  • Results of our coronavirus survey;
  • School resources and recommendations;
  • Emergency go-bag recommendations;
  • SADS Heart-to-Heart chats on Zoom for SADS families, featuring Weekly Kids and Teens Chat and Game Nights that offer a place for families with SADS conditions to connect and relax with one another during such a stressful situation;
  • #SADSathome, which includes videos, blog posts, etc., that feature SADS community members sharing some of the things they are doing at home for entertainment and education during the pandemic;
  • Living with HEART, which is a series of short videos put together by Jennifer Cory, MS, MAPP, Founder and Chief Hope Facilitator of HEART Initiative. This series provides information in the areas of hope, resilience, mindfulness, community, and relationships, to help individuals living with chronic diseases reclaim control and live with greater peace and happiness.

Program Changes This Fall

As the 13th International SADS Foundation Conference had to be cancelled, a Virtual Conference for SADS Families will be held in its place via Zoom on Saturday, November 7th, with the goal being to educate, empower, and engage families. Sessions include the latest treatments in regards to ICDs, other devices, and medications; research updates in LQTS, BrS, CPVT, and ARVD/C; a “Fireside Chat” with a panel of scientific and medical experts; disease breakouts with health care professionals as moderators; updated information on pregnancy while living with a SADS condition; and screening, genetic testing, and gene therapy. Hopefully, everyone will meet in-person once again in the fall of 2021 in Houston, Texas, partnering with the Texas Children’s Hospital.

The SADS Safe School campaign continued in September. Since schools across the country are planning both in-person classes and virtual classes for the upcoming school year, the SADS Foundation has adapted its SADS Safe School program accordingly with Individualized Care Plans and programs for in-person school as well as virtual programs to keep our kids safe at school and to help raise awareness about SADS conditions in the school community. 

Health care professionals can share with families that these resources are downloadable at StopSADS.org, including our recommendation that all SADS kids have a current care plan in place to keep teachers and school nurses informed of their SADS condition. 

For National Sudden Cardiac Arrest Awareness month in October, the SADS Foundation partners with sister nonprofit organizations in the Call-Push-Shock Campaign on all social media platforms. Call-Push-Shock aims to be as instinctual for sudden cardiac arrest as the Stop-Drop-Roll is for fire emergencies. All resources will be digitally available on the SADS Foundation website for anyone to use and share with others.

Family History Month in November encourages SADS families to take advantage of the holidays to talk with their family members about their family health history. Family members are provided with the SADS Pedigree Kit, which contains suggestions for how to proceed, including letters for family members, risk questionnaires, information on testing, and a family tree to fill out. Communicating the importance of expanding your family pedigree and cascade screening are crucial to saving lives. SADS-related sudden death is preventable, but only when every family member is informed.

Medical Education in 2020

The SADS Foundation is proud of our medical education program and is making plans to increase our webinars and other online services as our in-person symposia have been postponed this year. The primary focus of this integral program is bringing cutting-edge, world-class education to cardiac specialists (most notably electrophysiologists) and other health care professionals. We also provide education to primary care physicians/HCPs. This year, we are expanding and enhancing our Physician Referral Network (PRN). Let us know if you would like to be included in our PRN program by contacting us at SADS@SADS.org.

Our first live webinar, “New Approaches to Variants of Uncertain Significance,” was a fantastic session! Part 1, entitled “Big Data Approaches to Evaluating the Variants of Unknown Significance (VUS),” was presented by Dan Roden, MD, Professor of Medicine, Pharmacology, and Biomedical Informatics and Senior VP for Personalized Medicine at Vanderbilt University Medical Center. Part 2, entitled “Reducing VUS through Functional Modeling & Artificial Intelligence in Cardiovascular Genetic Testing,” was presented by Dianalee McKnight, PhD, FACMG, Medical Affairs Director, Emerging Clinical Omics, Invitae. 

Expert Consultations for Difficult Cases

One of the most valuable services facilitated by the SADS Foundation is to provide consultations for challenging cases submitted by physicians for review by our Scientific Advisory Council. Averaging 20 consultations per year, this program allows physicians treating patients with extremely challenging conditions to receive consultation, support, and recommendations from world-leading experts. This service has already contributed to finding solutions when it was thought none existed, as well as meaningfully added to the quality of life of affected individuals. Additionally, this knowledge is being circulated through medical presentations and peer-reviewed publications, raising care and treatment of SADS conditions to the next level. Diagnosing and managing patients with potentially life-threatening channelopathies can be challenging for physicians. A recent physician submitter said: “This was so, SO helpful! I was heartened to see that some of the things I worried about were noted by your amazing scientific advisors.”

Summary

The SADS Foundation will continue supporting families with SADS conditions, their caregivers, and their medical team members by exploring new and innovative ways to deliver our services and by proactively developing new programs to serve the needs of the SADS community. The mission to save the lives and support the families of children and adults who are genetically predisposed to sudden death due to heart rhythm abnormalities will not stop in spite of these unprecedented times. 

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