Ben Breedlove - Media Advisory
Ben passed away Christmas Day 2011 and his death went "viral" due to his Youtube channel and his recollection of his visions during a cardiac arrest earlier in the month. Ben's case is not common for HCM but it does underscore the unpredicable nature of the condtion and the importance of speciality care for the diagnosis.
FOR IMMEDIATE RELEASE Contact: Wendy Hirschhorn; 212-826-8790
HCMA REMEMBERS BEN BREEDLOVE AND ENCOURAGES YOU TO GET THE FACTS ON HYPERTROPHIC CARDIOMYOPATHY (HCM)
HIBERNIA, N.J., (January 5, 2012) – The Hypertrophic Cardiomyopathy Association (HCMA), a national resource and support center, mourns the death of Ben Breedlove, who died on Christmas. Ben, who was 18, died from complications due to Hypertrophic Cardiomyopathy (HCM), a genetic disease which results in a thickening of the heart muscle.
Estimated to affect one in 500 Americans, HCM is the leading cause of sudden cardiac death in children and young adults.
“In almost all cases, HCM can be detected and treated allowing patients to live long lives,” said Lisa Salberg, founder and CEO of the HCMA. “Although Ben was diagnosed at a young age and did receive medical treatment and an implantable cardioverter defibrillator (ICD), HCM is an often unpredictable disease that requires much more research to understand.”
Ben created and hosted "OurAdvice4You," a popular YouTube channel, where he gave dating advice to viewers. The week before his death, he recorded two videos “This is My Story: Part 1” and “This is My Story: Part 2” in which he used flip cards to silently tell his feelings about living with HCM. So far, the videos have attracted more than one million viewers.
“The technique is so effective that I’m encouraging our HCMA members to tell their stories the same way as Ben,” said Salberg, who shares her story about living with HCM.
Call to Action: Passage of the HEARTs Act and Donations in Memory of Ben
Last year, a fortuitous meeting between Salberg, and New Jersey Congressman Frank Pallone, Jr. was instrumental in the drafting of the Cardiomyopathy Health Education, Awareness, Risk Assessment, and Training in the Schools (HEARTs) Act, a bill which Pallone introduced to Congress this month.
The HEARTs Act mandates raising awareness about Sudden Cardiac Arrest (SCA) in schools and childcare centers and requires better prevention measures that will save young people’s lives. It requires the Secretary of Health and Human Services to coordinate with the Centers for Disease Control as well as patient advocacy and health professional organizations to develop and distribute materials about SCA. Also, it requires guidelines regarding the placement of life-saving automated external defibrillators in schools and information on cardiopulmonary resuscitation (CPR) training.
“It is because of young people like Ben Breedlove that the HCMA will continue to lobby hard for the passage of this bill,” said Salberg.
Mehul Mehta, a senior and classmate of Ben’s at Westlake High School in Austin, Texas, is spearheading an effort to raise awareness of HCM and to raise funds for the HCMA in Ben’s memory. The Westlake Student Council purchased 3,000 of HCMA’s signature red bracelets customized with Ben’s name. They will be distributed to Westlake’s students.
For more information about HCM or to make a donation in Ben Breedlove’s memory, visit www.4hcm.org.
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About the Hypertrophic Cardiomyopathy Association (HCMA)
Founded in 1996 by Lisa Salberg, the HCMA is a not-for-profit 501(c) (3) organization that provides comprehensive information about Hypertrophic Cardiomyopathy (HCM), a genetic disease that causes a thickening of the heart muscle. The HCMA provides support and advocacy for HCM patients and their families and medical providers to help prevent untimely deaths and advance global understanding about this incurable disease. For more information, visit www.4hcm.org or call 973-983-7429.