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.
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.
Elevate Danon Disease in the medical community in order to advocate for the best possible care
Provide trusted and centralized information and resources
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Jenny has over 15 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.
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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.
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Kim has had Danon Disease in her family for the past 30 years. She has many family members still living with Danon Disease and her family was one of the first in the United States to be diagnosed with the rare disease. She founded the Danon Disease support group on Facebook in 2009 after realizing she had no other families to talk to about this disease. It started out with just 20 people consisting of mainly her family and friends in support of what she was doing and has grown to around 300 families. She is a Danon Disease patient who fights for advocacy and knowledge of this disease. She was diagnosed when she was 21 years of age and has two boys who also have Danon Disease. She was born and raised in Texas then moved to Colorado where she resides with her husband and children. She works full time from home and homeschools her youngest. She enjoys connecting with other Danon Disease families and being an advocate for this disease.
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