What is gene therapy and how might it be used for heart disease? In the past few decades, through the efforts of dedicated researchers around the world and initiatives like the Human Genome Project, we have a much better understanding of how variations in our genes can cause or contribute to disease. Nearly 100 disease-associated
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Baby Alaynah’s DCM Story: Beating the Odds
Baby Alaynah was diagnosed with DCM and beat the odds, receiving a special heart transplant just before her first birthday. “After being diagnosed with severe dilated cardiomyopathy, a 5-month-old infant from Brunswick County was facing an uncertain future. However, she was able to beat the odds after becoming UNC Children’s very first Berlin Heart EXCOR™
Clinical Trial Now Enrolling for Patients with Genetic DCM (MYH7)
Dilated cardiomyopathy, DCM, has many causes and can be acquired or genetic. Genetic means a disease-causing change, or “mutation”, has occurred in a relevant gene. That mutation may have occurred in prior generations or may be new as just having happened in a patient 1,2. This type of DCM is called genetic DCM. Research
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First DCM Patient and Family Conference – a Great Success
The first-ever DCM Patient and Family Conference was held virtually on September 24, 2022. This well-attended event included 3 sessions: DCM Education, The Latest in DCM Research and Therapies, and Patient Panel Discussions. (See below for recording links.) We would like to give special thanks to all the DCM patients and family members who registered
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14-year-old DCM & Heart Transplant Patient Promotes Organ Donation
Max was eight when he was diagnosed with DCM. He’s received a heart transplant and now, at age 14, is campaigning for organ donation. He’s evidence of the fact that you can overcome hardship and make a difference at any age. Click here to read Max’s story: https://bit.ly/3Qpwukq
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DCM Patient and Family Conference: Session #3 Patient-to-Patient Panel Discussions
Two DCM Patient Panels discuss: Successfully Living with DCM- Fitness & Nutrition, Heart Transplant – Hope for the Future: Maintaining a Healthy, Productive Life; Panel 2: Self-Advocacy – When to Seek a Second Opinion, Talking with Health Practitioners, Finances and Insurance
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DCM Patient and Family Conference: Session #2 The Latest in DCM Research and Therapies
Potential New Therapies for Dilated Cardiomyopathy – Presentations by Industry Leaders; Industry Panel Discussion: Positive Research and Hope for the Future, Potential Roadblocks, Patient Involvement.
DCM Patient and Family Conference – Session #1: Dilated Cardiomyopathy Education
Dilated Cardiomyopathy Basics (Presenter: Dr. Kathy Crispell) – What is DCM – Diagnosis & Causes – Genetics & DCM; Successfully Navigating a DCM Diagnosis (Presenter: Barbara McKenna-Amos)
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One Woman’s 14+ Year Journey with DCM
Meet Sheila McCarr. She wanted to share her story to advance the DCM Foundation’s mission. Here is her story in her own words: “At the age of 52, I was told that it was highly likely I would need a heart transplant. I had been living with heart disease for many years but this news
New Potential Targets for Gene Therapy in Heart Failure Patients
New targets for gene therapy may have been identified by researchers at Harvard Medical School and Brigham and Women’s Hospital. They studied the specific cell changes that lead to heart failure diseases like dilated cardiomyopathy. “Our findings hold enormous potential for rethinking how we treat heart failure and point to the importance of understanding its
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