Who We Are
We are a community of people living with or affected by Danon Disease, and who are committed to supporting our loved ones as they navigate this rare disease. We are parents, children, siblings, relatives and friends who are working to build a better tomorrow through education, advocacy, partnership, science and research, and support.
Our Mission
The Danon Foundation boldly empowers people living with Danon Disease, providing trusted information, resources and support to help navigate life, from diagnosis to treatment.
We enable the best care possible by supporting education, increasing awareness, and building a community of patients, family members, caregivers, physicians, scientists, friends and partners.
Our Focus
Elevate Danon Disease in the medical community in order to advocate for the best possible care
Provide trusted and centralized information and resources
Support the Danon Disease community
Jenny has 2 years of experience in the healthcare industry, and is the head of corporate strategy at a biopharmaceutical company. She has been personally impacted by Danon Disease and is committed to providing a platform for the community that increases awareness, provides trusted information and offers resources to support the needs of those living with Danon Disease. Jenny is a graduate of the University of Pennsylvania and holds her MBA from NYU’s Stern School of Business and her MPA from NYU’s Wagner Graduate School of Public Service.
Get in Touch
jenny@danonfoundation.org
Danon Disease became a part of Amy’s life in 2012 with her daughter's diagnosis. At that time there was little or no information on Danon Disease. She connected with the Danon Disease Support Group on Facebook in 2018 when she needed it the most. Now, she wants to ensure that every person living with Danon Disease has a support system in place. Amy is a wife and a mom of three children. She enjoys traveling and being with her family.
Get in Touch
amy@danonfoundation.org
