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News from the Stanford Center for Inherited Cardiovascular Disease
Welcome to our Summer 2022 Newsletter
 
We hope that you and your families are staying healthy and enjoying your summer. In this newsletter you'll find information on our team's support groups, updates on new treatments for patients with hypertrophic cardiomyopathy, highlights of some of our team's recent research, and more!

As always please feel free to forward this message to anyone you feel might enjoy it. 
 
Warmest Regards,

The SCICD Team 
Stanford Center for Inherited Cardiovascular Disease Cardiomyopathy Support Group
Join us for a peer-led online discussion group with featured guest speakers!
  • Goal: Strengthen the DCM & HCM communities through resource sharing and emotional support
  • When: 6:00 pm-7:30 pm PST first Monday of the month (second in the case of first Monday holidays) - NEXT EVENT SEPTEMBER 12TH! 
              Click Here to Register or Scan the qr code above                              
Updates from Our Team: Mavacamten - A Groundbreaking Treatment for Obstructive Hypertrophic Cardiomyopathy
What is Mavacamten? Who is eligible? Does insurance cover it? Click here or the image above to learn more.
More on Mavacamten:
      Click Here To watch our other newsletter videos on Youtube           
This Year's My Heart Counts 5K/10K Run
Thank you to all who attended and contributed to our annual walk/run celebrating life, heart health, and wellness. It was so nice to re-connect back in person!
Funds raised goes towards GREAT CAUSES, including:
  • Education and screening programs for heart disease
  • Providing heart disease tests for those in need
  • Advancing cutting-edge research to prevent or cure heart diseases that still take too many, too early
Pictured above: Our Patient Heart Hero and heart transplant recipient, Frank Green (far left), is crossing the finish line, but this photo captures so much more than words can describe. His wife, to his right, is a kidney donor. And on top of that, her other brother and sister-in-law, far right, are running coaches/trainers for a 1,000 plus fitness group in the South Bay. Together, this amazing family works with SHC leadership and various patient communities to raise awareness about the importance of signing up to be an organ donor. The family mantra is, “One heart beat at a time”.
 

*Family consented to share photo and story
In the News
Dr. Euan Ashley and the ultra-rapid genome team at Stanford University achieved the Guinness World Records title for the fastest DNA sequencing technique with a time of 5 hours and 2 minutes. This was almost half as fast as the previous fastest ever genome diagnosis!
Read More || Watch Dr. Ashley tell the story
How does CRISPR help researchers study the heart? "Conditions such as rapid or irregular heart rates, cardiomyopathies (wherein the heart is unable to pump blood efficiently) and high blood cholesterol are ideal for CRISPR-based therapies, as they often have genetic roots, according to cardiologist and director of the Stanford Cardiovascular Institute, Joseph Wu, MD, PhD.  " 
Read More
Unconventional paths: Gorzynski and the great apes
"In humans, at least 50% of this type of cardiomyopathy is due to a genetic defect. Because humans and chimpanzees share a whopping 98% of their DNA, it stands to reason that whatever we know about humans could apply to chimpanzees, and vice versa."
Read More

Research from Our Team:
From the Bedside to the Bench
Wnt Signaling Interactor WTIP (Wilms Tumor Interacting Protein) Underlies Novel Mechanism for Cardiac Hypertrophy

About this Research:
"The study of hypertrophic cardiomyopathy (HCM)—a severe Mendelian disease—can yield insight into the mechanisms underlying the complex trait of cardiac hypertrophy. To date, most genetic variants associated with HCM have been found in sarcomeric genes. Here, we describe a novel HCM-associated variant in the noncanonical Wnt signaling interactor WTIP (Wilms tumor interacting protein) and provide evidence of a role for WTIP in complex disease".

Authors:
Hannah N. De Jong , Frederick E. Dewey , Pablo Cordero , Rachelle A. Victorio , Anna Kirillova , Yong Huang , Roshni Madhvani , Kinya Seo , Andreas A. Werdich , Feng Lan , Mark Orcholski , W. Robert Liu , Ayca Erbilgin , Matthew T. Wheeler , Rui Chen , Stephen Pan , Young M. Kim , Krishna Bommakanti , Cherisse A. Marcou , J. Martijn Bos , Francois Haddad , Michael Ackerman , Ramachandran S. Vasan , Calum MacRae , Joseph C. Wu , Vinicio de Jesus Perez , Michael Snyder , Victoria N. Parikh and Euan A. Ashley
Visit The Updated Ashley Lab Website
Learn more about our team and the innovative research being carried out!
"The Ashley lab is focused on the science of precision medicine. We study the human genome and apply computational approaches like machine learning to understand the integrated effects of genes and proteins on human health and disease. We are particularly interested in the extremes of human performance. We are fascinated by the heart—how it develops, adapts, contracts, and fails. In our wet lab, we explore cardiac biology, from the whole heart all the way down to single cells including induced pluripotent stem cells from our patients. We push them towards a cardiac myocyte fate and characterize them using a variety of bioengineering approaches."
Exercise and Your Heart
One of the best gifts you can give your heart is exercise.
Regular exercise is important for cardiomyopathy patients, and it improves your quality of life. Frequent aerobic exercise has been shown to help decrease blood pressure, cholesterol, triglycerides, and increase aerobic capacity. Regular activity will support your heart and your body will utilize oxygen more efficiently. In addition, exercise helps your mood by increasing serotonin (which helps your brain regulate mood, sleep, and appetite). Physical activity, such as brisk walking, even if it is for 30 minutes a day can still make a difference! Mild to moderate exercises, such as aerobic dancing, riding a bike, or yoga are all great ways to get your heart rate up.

Two golden rules to remember are:
 
1) Talk to your health care provider about the best approach to exercise for you
2) Warm-up and cool-down for 5 minutes before and after exercise

Learn more about monitoring heart rate and the benefits of a warm-up & cool down here
Patient Resources
These organizations provide information, support and resources for families and individuals with inherited heart conditions.
Children's Cardiomyopathy Foundation
Pediatric
Cardiomyopathy
Hypertrophic
cardiomyopathy
Dilated
cardiomyopathy
LONG QT, CPVT, BRUGADA SYNDROME, SUDDEN DEATH, AND OTHER INHERITED ARRHYTHMIAS
the family heart foundation - Familial Hypercholesterolemia & Lp(a) resource
The  Marfan Foundation
STANFORD CENTER FOR INHERITED CARDIOVASCULAR DISEASE alt tag goes here
Stanford MEDICINE | Lucile Packard Children's Hospital
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Our mailing address is:
Stanford Center for Inherited Cardiovascular Disease 300 Pasteur Dr, Stanford, CA 94305-2200

Our email address is: familyheart@stanford.edu
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Stanford Center for Inherited Cardiovascular Disease · 300 Pasteur Dr · Stanford, CA 94305-2200 · USA