Research & Learning Opportunities





SADS Postcard meeting

10th Annual International SADS Foundation Conference

Toronto, Ontario, Canada

Family and Youth Sessions are Sept. 22-24, 2017

Taking AIM at Cardiac Rhythm Disorders: “AIM” for Awareness, Information, and Making a Difference

CME Session is September 22, 2017

Preventing Sudden Cardiac Death: Risk Profiles and Red Flags

For details and registration click here.

Dr. Adaya Weissler of Toronto General Hospital will be speaking specifically about HCM





Dr. Carolyn Ho, a doctor who has devoted much of her career to HCM research and who is responsible for this study which identified several factors which appear to predict the development of HCM in individuals who are Gene +, is looking for a few more candidates for the VANISH study which finishes recruiting in November of this year.  Dr. Ho has provided the below information on the study.  If you are interested, contact Stephanie Harris at Brigham and Women’s Hospital at 617.525.7168 or via email at:


Research advances over the past two decades have allowed us to identify mutations in key genes that are responsible for causing Hypertrophic Cardiomyopathy (HCM). As a result, we are now able to perform genetic testing to identify people who are at-risk for developing HCM before they have any signs of HCM. When someone has a mutation that causes HCM but does not yet have any signs of the disease, the current approach is for that person to be followed closely by a cardiologist to watch for the development of HCM. At this time, there are no known medications that can delay or prevent the development of HCM.

However, genetic insights have allowed us to better understand the beginning stages of HCM and to test how disease development might be slowed or interrupted. Studies performed in mice with HCM have suggested that there may be a way to slow the progression of HCM with early, safe treatment with medication.

To see whether medication can slow or prevent the development of HCM in humans, Dr. Carolyn Ho from Brigham and Women’s Hospital, along with other HCM experts, have joined together for the VANISH trial. The VANISH trial is a clinical trial investigating whether a drug called valsartan can delay the onset or slow the progression of HCM. Valsartan is a safe medication that has been commonly used in adults and children to treat high blood pressure and heart failure; however it’s never been studied in people with HCM. The VANISH trial is a key first step to gaining the critical knowledge and experience we need to develop new treatments that may actually be able to prevent HCM!

The VANISH trial is still recruiting subjects through the fall of 2016. You may be eligible if you are:

  •  8-45 years-old
  • have a mutation in one of the genes that is known to cause HCM
  • are diagnosed with HCM or at-risk for developing HCM
  • have little to no symptoms caused by HCM
  • VANISH study centers are located across the United States, Canada, Denmark, and Brazil

You do not need to be a patient at a study center to enroll. The study doctors will work closely with your doctors to ensure that your care is properly coordinated. If you want to be in the trial but cannot afford to travel to a study center, limited financial assistance may be available.

A webinar of Dr. Ho discussing the study can be found here.