A 19-year-old mother from Allerton, England was diagnosed with dilated cardiomyopathy and fell very ill when she was pregnant, forcing an early birth via c-section. She received a heart transplant and initially faced complications that kept her in the hospital, but she eventually recovered. Her resolution now is to “live her best life”. Read her whole
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Natural History Study Seeks Participants with MYBPC3 Genetic Mutation
Tenaya Therapeutics, a biotechnology company committed to discovering, developing, and delivering curative therapies that address the underlying causes of heart disease, is sponsoring a study to better understand pediatric cardiomyopathy due to the MYBPC3 mutation. The MyClimb Natural History Study is designed to collect and evaluate information on the course of cardiomyopathy in children and adolescents <18
Protect Heart Transplant Recipients – a message from Dr. Kathy Crispell
Recently, one of my former patients and his wife stopped by for a visit to my home in eastern Washington, in an area called the Palouse. This was their first visit to the area and despite being experienced international travelers, they were enchanted by the autumn beauty of the Palouse. We wanted to go out
Advancements in Gene Therapy Manufacturing
By creating scientific forums to foster collaboration and creativity, Tenaya Therapeutics has been able to optimize gene therapy manufacturing. Such advancements can help make gene therapy more accessible and affordable for larger patient populations. Read the full article here: https://www.cellandgenecollaborative.com/doc/the-ties-that-bind-engineering-a-cgt-manufacturing-centric-culture-0001
BAG3 Mutation Discovery & Gene Therapy Development
The following documentary film demonstrates the discovery of the BAG 3 genetic mutation that can cause DCM and the development of the gene therapy that became Renovacor. Please click here to view the video to learn more: https://vimeo.com/173290791
November is National Family Health History Month
Genetic research has shown that 20-30% of individuals with DCM may have another affected family member. This is due to family members inheriting the same mutations in the genetic code of one or more genes whose role is key for normal heart muscle function. Genetic testing is now widely available from laboratories. It is recommended
Unite and be heard at the upcoming Virtual Global Heart Hub Summit!
On the 22nd and 23rd of November, the Global Heart Hub is bringing together the cardiovascular patient community from across the world for its first annual VIRTUAL Unite Summit, aimed at strengthening the voice of those living with heart disease. Date: Mon/Tues – November 22nd & 23rd (two half-day sessions) Time: 15:00 – 18:00 CET (Click here to check the
Thank you to Dr. James Priest from Tenaya Therapeutics
We’d like to say thank you to Dr. James Priest for being our guest presenter on this month’s DCM Foundation webinar, “The Science Behind DCM Gene Therapies – and Tenaya’s Quest to make it Affordable for All”. Dr. Priest is a pediatric cardiologist and the Senior Director of Cardiovascular Genetics at Tenaya Therapeutics. As he
Finding Help for Anxiety Associated with DCM
Some medical practices or hospitals have support groups where patients can gather to discuss in person their situations. Check out the resources available in your area, or online and get involved. You’ll be better for it, and probably help someone else experiencing the same feelings as you have. Support groups on social media may also
Benefits of Genetic Testing
Research has shown that about 1/3 of all adults in the US will develop some form of heart condition during their lifetimes. Some heart conditions are due to hereditary factors. Click here to learn about the benefits of genetic testing, how it can help you, and who should consider being tested.