As we find ourselves at the end of January, Amy and I wanted to share a few updates on what we have been up to with the Danon Foundation. We continue to see our community expand with new members and are working hard to continue the momentum we built last year into 2026.
We realize that you might not be aware of some of the work we have been doing, and wanted to share a few highlights from 2025, as well as what we have planned for 2026. One of our goals this year is to share information with you as much as we can in real-time through these updates or regular community calls.
A RECAP OF 2025
Rare Disease Day
Amy and I spoke at Rare Disease Day at Rocket, and we were excited to meet Brittany and Micah, who were also guest speakers. We were inspired to see how Micah started Transplant Teenz to support younger transplant community.
For 2026, Micah was chosen to represent the United States for World Rare Disease Day. Thanks for all the work you do to represent Danon disease and the transplant community!
Your stories that you shared with Amy were part of this day and a powerful message to reiterate how our community continues to advocate and hope for treatments for Danon disease.
Amy shared her story on Rare Disease Day at the New York Stock Exchange
Updates to Our Website – Support for the Newly Diagnosed
In November, we updated our website to provide more resources, especially for the newly diagnosed, in an easily accessible way. We also launched our resources directory to provide a one-stop place for Danon research.
We will continue to update in 2026 with more information and resources. If you have feedback or resources you think should be shared with our community, email us at contact@danonfoundation.org
Advocacy Collaborations and Non-Profit Partnerships
We continued to build work with other organizations in the cardiomyopathy space to help bring more resources to our community, as well as spread the word about Danon disease.
A special thank you to the DCM Foundation and Genetic Cardiomyopathy Awareness Consortium (GCAC) for collaborating with us and Dr. Joe Rossano on this video explaining Danon disease.
Working with GCAC, we helped launch free genetic testing for people with cardiomyopathy and their immediate family members. For more info, visit this page.
As a US-based organization, the Danon Foundation became an affiliate of the Global Heart Hub and its Cardiomyopathy Patient Council to expand our resources to the global community. We were proud to be a supporter of the Think Cardiomyopathy campaign in 2025.
In the 2nd half of 2025, we represented Danon disease both at the Global Heart Hub Cardiomyopathy Council Meeting in Madrid, Spain, as well as the HCMA Patient Meeting in Morristown, NJ.
Danon Voices in Advancing Research and Development
We continue to work with industry partners in healthcare, biotech and pharma to provide feedback from all of you on living with Danon disease, getting genetic testing, participating in clinical studies, and more broadly, the needs of our community.
LIVING WITH DANON | YOUR STORIES
This year, we want to continue sharing your stories of living with Danon disease from around the world. From Japan, Nanako and her twin sister have both been diagnosed with Danon disease. Here is her story (translated into English).
Meet Nanako
I am a Japanese female patient with Danon disease that has affected me and my twin sister in very different ways. While my sister has a confirmed diagnosis, she shows no symptoms and does not require treatment. On the other hand, I have developed atrial flutter, atrial fibrillation, and WPW syndrome.
In February 2022, I was experiencing bradycardia symptoms and was hospitalized. During testing, a life-threatening arrhythmia was discovered, leading to the urgent decision to have an ICD implanted. Additionally, to stop arrhythmias like tachycardia and atrial flutter, I underwent ablation surgery three times over the next three years. My condition is now stable.
Nanako (right) and her twin sister (left)
I believe Danon disease is difficult to diagnose. I had an older brother who had liver problems at age 11 and heart issues at age 14. These were symptoms characteristic of Danon disease, but back then, we lived without knowing what illness it was. My mother found a research paper on Danon disease and eventually, my brother was diagnosed with Danon disease. My brother passed away at age 16, and I began experiencing symptoms when I was 14 and started on medications. My own diagnosis came after our persistence, despite initial reluctance from my regular doctor.
Living with Danon disease has meant facing not only physical challenges but also emotional ones. I am grateful for the care I receive despite the reality that there are very few Danon disease specialists in Japan. I hope that sharing my story contributes to research progress so that appropriate treatment reaches patients who need it as soon as possible.
If you are interested in sharing your story and being featured in our newsletter, please email us at: contact@danonfoundation.org
LOOKING AHEAD IN 2026
For 2026, we wanted to share a few initiatives that we are working on and would like your feedback.
Continuing to Build Our Community – Through partnerships with other patient and advocacy groups, we are working to pool resources in a way that helps support your day-to-day life with Danon. We continue to learn, expand, and share our story of rare disease with the broader heart community. In 2026, we hope to bring our community in a meaningful way. Some of you have reached out already to help us with this, and we will be in touch!
Resources and Information – We are expanding the resources available on our website to provide you and your loved ones with information. Getting a Danon diagnosis is devastating, and we want to support those who are newly diagnosed with accessible and digestible information
Access to Genetic Testing – Studies show that rare diseases take on average seven years to diagnose. Many with a cardiomyopathy diagnosis are not getting genetic testing. People living with Danon experience challenges on both sides, and that is why we are collaborating to bring greater access to genetic testing and counseling to the Danon community
Danon Advisory Group – As a rare disease organization, we believe that some of the most helpful information is the lived experience from each of you. A parent/caregiver advisory group is in the works, and we will launch this year. If you are interested in participating, please email jenny@danonfoundation.org
Females, Females, Females – We know how important it is to support the females in our community. Many of you are diagnosed with Danon or are caring for a loved one with Danon, or both. We recognize this and we continue to advocate for each of you – telling your stories, voicing your needs and challenges, and sharing your courage. This year, we will focus on ways to support you through the Danon Advisory Group and welcome your thoughts
Over the holidays and new year, we had the chance to spend time with family and reflect on the past several years, not just 2025. We are grateful for this community and especially for those of you that we have been able to connect with, learn from, and work with. We invite you all to be a part of our continued journey.
With gratitude,
Jenny and Amy
Follow us on social media!
Want to stay up-to-date on our latest news? Sign-up here!
