Executive Team

Greg Ruf Founder and Executive 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. In 2023, Greg launched the Genetic Cardiomyopathy Awareness Consortium to increase awareness about the role genetics plays in cardiomyopathy and the need for more patients to get genetically tested. 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 35 years, and together they have three grown children and many wonderful grandchildren.

Buddy Butler Marketing Director

Buddy Butler works with his spouse, Nikki, at Nikki Butler Design. He was previously a partner in Narrative by New South Media. He has worked in the development of brand strategies for more than a dozen destinations in Georgia, New Jersey, Ohio, Virginia and West Virginia. Prior to joining Narrative, he served as senior vice president of the Stonewall Group, a full- service marketing agency.

Butler served on the West Virginia Tourism Commission from 1999 to 2002 and is chair of the West Virginia Hospitality & Travel Association. In 2002, he was named a “Distinguished West Virginian” by Governor Bob Wise for his work in tourism. He received a bachelor’s in communications from Bowling Green State University and a master’s in organizational communications from Ohio University.

Nikki Butler Patient Outreach & Media Manager

Nikki Butler is a multi-talented graphic designer with more than 25 years of experience in creating and promoting brands for destinations, businesses and individual entrepreneurs. She is especially adept at creating multi-page catalogs and publications from initial concept to finished product. Nikki Butler Design provides graphic design, website design, digital media, brand development, social media, marketing and content development services.

Nikki founded Nikki Butler Design in 2011. Prior to having her own business, she was a Senior Graphic Designer with Stonewall Retail Marketing in Marietta, Ohio for 10 years. While at Stonewall, she worked on campaigns for West Virginia Tourism, Tamarack, Adventures on the Gorge, Greenbrier County CVB, Visit Southern West Virginia, and many others.

Christy Johnson Coordinator of Gene-Specific Groups

Christy was diagnosed with Desmoplakin Cardiomyopathy in 2020 after going into sustained ventricular tachycardia out of what seemed like the clear blue sky. Although Christy is the proband in her family, her “healthy” father had died of an arrhythmia in his sleep at age 51 and her aunt died of heart failure. It was not until Christy’s diagnosis that the genetic link was discovered. 

Christy’s struggle to get information about her diagnosis and traumatic events related to her condition ignited her passion to help others with genetic cardiomyopathy. She started the DSP Cardiomyopathy Support Facebook group in 2021 and now volunteers with the DCM Foundation to help start and build more gene specific groups to provide information, connection and support.  She chairs the Board of Trustees of the SADS Foundation and the SADS ARVC Steering Committee. In her previous career, Christy was a high-tech consultant and product and program management leader. She lives in Scottsdale AZ with her husband, two daughters and Molly-dog.

Shauna Planck Genetic Cardiomyopathy Registry Manager

In 2017, Shauna was diagnosed with an LMNA mutation which caused cardiomyopathy. Since then, she’s had an ICD implanted and has been inspired to raise awareness and provide support for others navigating this disease.

Shauna’s background is in consulting. She’s worked with healthcare, non-profit and biopharma organizations to improve processes and support meaningful projects. As the Genetic Cardiomyopathy Registry Manager for the DCM Foundation, Shauna manages the registry’s daily operations and helps participants with their questions. She’s passionate about using this work to support research and provide better resources for families affected by DCM.

Shauna lives in Denver, Colorado, and loves spending time outdoors with her family.

Stephanie Fallon Patient Resource Consulatnt

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. 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 patient resource consultant for the DCM Foundation, responding to cardiomyopathy patient questions, sharing information and educational resources, and providing patients and family members with hope and support.