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Greg RufExecutive Director |
In 2014, Greg was diagnosed with DCM and required an ICD. Through genetic testing, it was revealed he had three mutations responsible for his DCM. A number of his relatives carry genetic mutations that can cause DCM.
Greg retired from his work as a business entrepreneur and in 2017 he launched the DCM Foundation to bring education, hope, and resources to DCM patients and their family members. Greg’s hope is that by raising awareness and supporting DCM research, a means will be found to halt, reverse or even completely prevent DCM from developing in at-risk individuals.
After a period of worsening heart failure, on July 15, 2021, Greg had a successful heart transplant. Greg lives in Dublin, Ohio with his wife Brenda of over 30 years, and together they have three grown children and three grandchildren.
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Adam BurkhartDirector of Patient and Family Services |
In 1988, at the age of 6, Adam was diagnosed with DCM, which was later discovered to be caused by the TPM1 genetic mutation.
Adam was able to live a healthy and active life until he was 17, when he had heart difficulties which required a transplant. After a 7-month hospital stay, he received a life-saving heart transplant on September 14, 2000, at The Ohio State University Wexner Medical Center at Ross Heart Hospital in Columbus, Ohio. Since then, Adam has been able to lead a very productive and active life for more than 20 years post-transplant.
After his transplant, Adam worked as a plumber/pipefitter for 18 years while working to obtain his Bachelor’s degree in business on nights and weekends. He has since worked in account management and sales in the logistics industry.
Through genetic testing, Adam and his wife learned that two of their three children also have genetic mutations which can cause DCM. Sadly, they lost their 4-month-old daughter, Rowe, to DCM before genetic testing could be completed. After donating her organs to research, Adam and his family hope something will be learned from this tragedy.
Today, Adam continues to volunteer for Lifeline of Ohio, The Ohio State University Wexner Medical Center at Ross Heart Hospital, and Nationwide Children’s Hospital. He lives in Zanesville, Ohio with his wife and their three children, and enjoys time with friends and family, traveling, and golfing.
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Jae-ann Rock, M.Ed.Director of Information and Education |
Having worked with Greg Ruf in other business ventures since 2015, Jae-ann was honored to join the DCM Foundation in 2019. She utilizes her business and marketing experience to expand the Foundation’s impact and reach, providing information about dilated cardiomyopathy and the genetics of cardiomyopathy to DCM patients, family members, and the medical community.
Jae-ann is also a third-generation member of the groundbreaking Framingham Heart Study, a cardiovascular cohort study that began in 1948. Much of the now-common knowledge concerning heart disease – such as the effects of diet, exercise, and common medications such as aspirin – is based on this study.
In her free time, Jae-ann enjoys spending time with her family, traveling, gardening, hiking, and volunteering.
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Stephanie FallonFacebook Group Consultant |
Stephanie was diagnosed with DCM at the age of 15 and has lived well with cardiomyopathy for more than 40 years. In 2012 she learned she has the MYH7 gene mutation which can cause DCM. Of her three children, two have DCM caused by the same gene. And of her three grandchildren, one has DCM with the MYH7 gene mutation.
For more than 20 years Stephanie worked as an accountant. Then, more than 10 years ago, she started a DCM Facebook group to help DCM patients and family members share stories and treatments. She now manages two DCM patient Facebook groups totaling more than 7,000 members.
Today, Stephanie also works part-time as a Facebook consultant for the DCM Foundation, sharing information and educational resources with cardiomyopathy patients, and providing them with hope and support.
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Lea GeliMarketing and Admin Consultant |