Ebstein's Anomaly Foundation

11/21/2024

Today marked my final cardiology check-up with Dr. Marx before his well-deserved retirement. Words can’t fully capture my gratitude for his 17 years of care, expertise, and unwavering dedication to my health and to so many others. My heart—and so many others—beats stronger because of you. ❤️

I’m also deeply proud of the Ebstein’s Anomaly Foundation, raising and donating thousands of dollars to support life-changing research. Today we proudly donated $12,500 to the cause. From the various donations over the years, the team has almost completed patient enrollment for the Cone procedure study, gathering quality of life data that will shape the future of Ebstein’s treatment.
From these donations, they’ve also hired a research assistant to analyze outcomes, creating a database that will provide vital insights into the long-term effects of this surgery. Soon, Dr. Zielonka will publish these findings in a scientific paper that has the potential to transform how this condition is treated worldwide.

Thank you, Dr. Marx, and the entire team behind this work, for your commitment to improving the lives of those with Ebstein’s Anomaly. You’ll always hold a special place in my heart, and I’m grateful to now be in the trusted care of another esteemed cardiologist, handpicked by Dr. Marx himself 🫶

09/20/2023

Arden's Story

How Ebstein's Anomaly affected my life and what we are doing to help others with this rare condition

02/13/2023

Ebstein's Anomaly Foundation January News Letter

January 2023 - News Letter Please Donate Today!

01/20/2022

Thank you all for the continued and generous donations to the Ebstein’s Anomaly Foundation! Today we proudly donated $10,000 to the ongoing research of this heart defect and patient outcome!

We presented the check to Arden’s cardiologist, Dr. Marx, and Dr. Benjamin Zielonka who is presently working on a great project to evaluate the quality of life issues in patients that have undergone the Cone procedure. This donation will go towards this research!

09/25/2020

Over the past 13 years, there have been many phases of my cardio health. I am proud to say that I finished my stress test this year with an amazing improvement of 66% in 2017 to 93%!!!! (A normal person is 80%) Words can’t begin to describe all the emotion and happiness I feel of this accomplishment!

I have learned over time, the importance of cardio and exercising in ways that push my heart to be better. I have always been very active, however, during the past 3 years I have changed my workout routine to mostly be high intensity cardio and interval training. When a workout is tough, it means my body is changing. When I feel sore, my muscles are strengthening. When I want to give up, I remind myself that won’t get me anywhere by making excuses and complaining. I decided how much I wanted to be better, and proceeded accordingly by clearing my mind of “can’t” to be capable of things unthought of. My congenital heart defect and heart surgery didn’t stop me from achieving the impossible— if you want it, go get it!

Thank you again to the Boston Children’s Hospital and Dr. Marx for the endless love and support over the years. Most importantly, I’m forever thankful for my parents, family, and friends sticking by my side since day one.

Yesterday, we also donated $5,000 from the Ebstein’s Anomaly Foundation to the Boston Children’s Hospital Trust to help fund research in order to advance the diagnosis, treatment and prevention of this rare congenital heart defect. Please donate to the Ebstein’s Anomaly Foundation (http://ebsteinsanomaly.org) to help kids like me achieve their goals!!!! Any amount helps!!!

08/06/2020

What is resilience?

I wanted to share inspiration to kids and adults who are not only living with congenital heart defects, but also other problems that you may have braved and experienced. Growing up, I survived heart surgery and also many other (random) health issues that always kept me on my toes, and never taking life for granted.

There are many things I’ve learned about how to strengthen my mind and my body during tough times, and having family and friends, constant positivity, and the courage to strengthen and heal when times were uncertain, helped make me a tougher, healthier, and happier person.

I have learned that working out and being healthy is a privilege, not a right. When you’re healing or reaching for the best version of yourself, any range from recovering from an injury or surgery, to achieving your workout goal, small amounts of effort and commitment will create results, and taking things one step at a time will lead to those accomplishments. Do not accept failure, accept effort. Challenging things change you, and when I really felt like stopping because it was hard, I thought about where I started, and how far I had come. Things will get in your way, but if you see it and take it face on, you will get past it! Progress can sometimes be hard to recognize; don’t forget to honor it, recognize it, and harness the small wins to accelerate you forward. Be responsible to not only your body to heal and be strong, but also your mind— if you put your mind to something, and anything is possible! This is resilience.

If you have any questions, don’t hesitate to reach out— we’re in this together!

Email at: arden@ebsteinsanomaly.org
Visit us at:
ebsteinsanomaly.org

@ Ebstein's Anomaly Foundation

06/24/2020

AmazonSmile customers can now support Ebstein’s Anomaly Foundation Inc in the Amazon shopping app on iOS and Android mobile phones! Simply follow these instructions to turn on AmazonSmile and start generating donations to help fund research for this heart condition 🌞❤️

1) Open the Amazon Shopping app on your device

2) Go into the main menu of the Amazon Shopping app and tap into 'Settings'

3) Tap 'AmazonSmile' and follow the on-screen instructions to complete the process

If you do not have the latest version of the Amazon Shopping app, please update your app! Thank you!

Online shopping for AmazonSmile Mobile App Instructions: Featured Stores at Amazon.com

10/29/2019

We have launched our new web site. Check it out.

The goal of the Ebstein's Anomaly Foundation is to fund research in order to advance the diagnosis, treatment and prevention of this rare congenital heart defect. This will benefit not only patients with Ebstein's but also many others with related congenital heart defects.

06/10/2019

While in Boston last week for Arden's annual check up, our foundation donated $7500 to continue the research to help kids with this rare heart defect. It has been 12 years since Arden had the "Cone Procedure" to repair her heart defect. She was the 6th child in the U.S. in 2007 to have this procedure and now the Cone Procedure is used commonly to repair the tricuspid valve. Please read more below how money donated from our foundation is used for research.

Gerald Ross Marx M.D.
Associate Professor Pediatrics
Harvard School of Medicine
Senior Associate Cardiology
Boston Children’s Hospital

• Currently we are evaluating the results of the Cone operation from our 160 pts. We are investigating how the tricuspid valve and right ventricle are working. This is accomplished by a combination of a 2 and 3 D echo, and repeat MRI. We are analyzing the exercise capacity by a formal exercise test. Last, we are doing a self-assessment questionnaire to see how the patients feel they are doing, and to determine if the surgery has improved the quality of life. Monies from the Ebstein Foundation have been used to support this research.
• We have two women working on the project to obtain this follow-up information, gather the information together, and do statistical analysis. Many of our patients live in other states and countries, making this a more arduous task.
• I am very proud to tell you that one of our young doctors, Maria Chavez presented some of the initial findings at the American Heart Association meetings last year in California. Monies from the Ebstein's foundation helped to support her travel to his meeting.
• This information from this study is essential to help our young people with Ebsteins. The monies donated will be used to offset the costs of this project.