August 2026 Newsletter - Danon Foundation

Updates on the Danon community and how to get involved

Danon Foundation Newsletter | August 2026

AUGUST 2026 | ISSUE 3

COMMUNITY NEWSLETTER

Summer is flying by and we can hardly believe that Autumn is just around the corner. We wanted to share a few updates that are making us excited about the days to come, including a BIG ANNOUNCEMENT at the bottom of this newsletter under Upcoming Events!

EDUCATION, ADVOCACY & AWARENESS

The First Global Heart Hub Patient Networks Meeting

In June, we were proud to join Global Heart Hub and delegates from across 27 countries and 52 patient organizations for its first Patient Networks Meeting in Amsterdam, where we exchanged best practices, defined priorities, strengthened collaboration and amplified the lived patient experience.

One of the most powerful moments was sharing the experiences of living with Danon disease and how complex and challenging this disease is to navigate. We were proud to broaden the awareness to global heart organizations who can share information about Danon disease with their communities.

Understanding Cardiomyopathy Podcast: Danon Disease

We were so delighted to collaborate with Libby Jarman and Understanding Cardiomyopathy on a podcast specifically about Danon disease, featuring Professor Juan Pablo Kaski in the UK. We are so grateful for the support from Libby and Professor Kaski. The podcast is available to listen to on our website.

In this episode:

What Danon disease is and how it affects the heart
Why gene therapy is such a significant milestone
The impact on patients and families
What the future may hold for cardiomyopathy research and treatment

Listen here

Update on the Courage Fund

We announced the New Courage Fund in April this year, and we are pleased to share that we have distributed stipends to multiple participants since launching this new initiative! The Courage Fund provides families with experiences to make memories while engaged in Danon disease research.

The best part of this fund is hearing from you and seeing moments of joy in your lives using the Courage Fund for your experiences

If you are participating in a clinical study or research for Danon, please reach out to us if you would like to apply for the Courage Fund!

Learn more

Expanding Our Influence

In July, we were selected to serve on the Patient Advisory Group at the Alliance for Regenerative Medicine. This two-year term allows the Danon Foundation to provide our community’s perspective and influence the organization’s policy and advocacy agenda across the regenerative medicine space. Learn more here.

BUILDING OUR COMMUNITY

Your Stories – Living with Danon Disease

Your Stories create awareness, build connection, and inspire research.

We are working on the Danon Foundation website to share stories about you and your loved ones – and how this disease has affected your life. It’s space for us to honor loved ones, raise awareness, and help others who are just learning about this disease.

We know that not everyone wants to share personal details, and we’ll work with you to respect your privacy every step of the way.

You can share your story in writing or if you prefer audio/video, we have those options available too. Contact us with questions or more info: contact@danonfoundation.org

Share Your Story

UPCOMING EVENTS

Danon Community Monthly Meeting – Wednesday, August 12th

Our monthly online community meetings are open to anyone connected to Danon disease — patients, caregivers, family members, and loved ones. Join us Wednesday, August 12th at 8pm Eastern.

BIG ANNOUNCEMENT!

Save-the-Date! Danon Awareness Day: October 24th, 2026

Mark your calendars! On October 24th, 2026, the Danon Foundation community is coming together virtually for Danon Awareness Day, a day dedicated to raising awareness for Danon disease, honoring our patients and families, and connecting with one another no matter where you are.

Why It Matters

Danon disease is rare. It can take years to get a diagnosis, and few people outside our community understand what it means to live with this disease every day. We are using this as our chance to be seen, to be heard, and to remind each other that no one in this community is facing Danon alone.

Details coming soon! Email us if you have questions or want to get involved.

Save-the-Date!

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