May 30, 2017
BENEFITING: The Sudden Arrhythmia Death Syndromes Foundation
EVENT DATE: Sep 30, 2016
* See link for more about me*
Sudden Arrythmia Death Syndromes(SADS) include one of my heart conditions, Long QT Syndrome, as well as many other conditions including Brugada Syndrome, SQTS, CPVT, Timothy Syndrome, and Wolff Parkinson White Syndrome.
- Each year in the United States, approximately 210,000 Americans die suddenly and unexpectedly due to Sudden Cardiac Arrest. (American Heart Association 2017)
- 10-12% of Sudden Infant Death Syndrome (SIDS) cases are due to Long QT Syndrome.
- LQTS is now known to be 3 times more common in the US than childhood leukemia.
- 1 in 200,000 high school athletes in the US will die suddenly, most without any prior symptoms—JAMA 1996; 276
As a current graduate nursing student, as well as a SADS fighter, these statistics are frightening to me and indicate that something needs to be done to bring about more advocacy and research.
You can get involved by donating to my team, joining, viewing my profile and voting/commenting, or by registering to be a walker/ runner for an event in July called Virtual Take Steps to Stop SADS. The Virtual Take Steps to Stop SADS Walk is designed for walkers and runners all over the country who want to take part in the signature event of the SADS Foundation, but cannot organize a formalized event. Through the entire month of July, walkers from all over the nation will run or walk in their local neighborhoods to spread awareness about SADS conditions and raise funds for the SADS Foundation. The Virtual Take Steps to Stop SADS Walkgives you the flexibility to participate wherever, whenever, and however is most convenient for you. Then share your experience, pictures and connect with others that are running the same virtual race using hashtag: #TakeStepsStopSADS.· Register for the walk at www.sads.org/Development/Take-Steps-to-Stop-SADS/Register. Become a part of the team on the SADS Foundation's CrowdRise Page www.crowdrise.com/virtual-take-steps-to-stop-sads-july-2017.For a registration fee of $15 for an adult or $45 for a family, you will receive a race packet. Each packet will include the following:·Take Steps to Stop SADS T-Shirt,·Take Steps to Stop SADS Wristband, Take Steps to Stop SADS Postcards, Flat Bob Cutout. I am already registered and ready to spread awareness!
Any support and/or participation would be greatly appreciated!
Love you all so much!
Peace and Blessings,
SADS Foundation wrote -
The SADS Foundation is on a mission to eliminate sudden cardiac deaths due to inherited arrhythmias, and until we do we will campaign for awareness, deliver comprehensive support to affected families, expand knowledge within the health care community, and magnify the influence of patients and families on research.
With your financial support of exciting new initiatives and the comprehensive services of the SADS Foundation, you will be saving thousands of young lives and enriching life’s activities for affected individuals. You will be encouraging patient and family empowerment, medical education of cardiac and frontline health care professionals, and connections between researchers and patients for groundbreaking research studies which all lead to the most beneficial care and treatment of families with SADS conditions. Our commitment to you is to ensure mutually beneficial opportunities – where you have access to affected families, key physicians, researchers and opinion leaders in the fields of cardiology and electrophysiology.
Medical Seminars and Webinar: The SADS Foundation is regularly approached by academic centers, healthcare systems and practices to bring medical education to their facilities and faculty through on-site seminars or live-streaming webinars. The SADS Foundation has responded with a robust seminar series and webinar series that afford the means to not only support the SADS Foundation, but leading healthcare providers.
Family Seminars and Webinars: Regional family seminars are held several times a year bringing in local experts to interact with families in addition to live-streaming webinars for those who cannot travel from national experts about topics such as the following: New Perspectives for Patient Management, Research and Recent Advancements; Genetic Screening, Pharmaceutical Care, and ICD Therapy. Question and Answer Sessions are provided after presentations furthering the value of these events.
Disease-Specific Communities Resources: In order to individualize support, the SADS Foundation is bringing together families who share a specific condition under our umbrella. Staff and community members join forces as they seek to maximize resources and opportunities that will lead to improved family support, medical education and research for the community’s particular condition. Projects being undertaken at this time include disease-specific materials as well as closed blogs, interactive webpages, and facebook groups.
Awareness Materials: The SADS Foundation provides the most up-to-date information about SADS conditions for our families and physicians through a myriad of printed and online publications including: Brochures and Fact Sheets; Online Resources at www.StopSADS.org; Family Campaign Materials; Quarterly Emailed Literature Reviews; Monthly E-Newsletters; Semi-Annual Print Newsletters.