Mother of Daughters with Dystonia Wins Rare Life Survival Award

Volunteer earns $5K for Dystonia Medical Research Foundation to promote awareness and fund research.

Online PR News – 11-March-2015 – Warsaw, KY – Eagle Rare Kentucky Straight Bourbon Whiskey has named Melissa Phelps the winner of the 2015 Rare Life Survival Award. Eagle Rare will donate $5,000 to Phelps’ charity of choice, Dystonia Medical Research Foundation—an organization that funds research and helps families fighting the rare disease that affects her two young daughters.

Phelps has two daughters (Olivia, 4, and Madison, 2) with dystonia, a rare neurological movement disorder. Over the last two years, she raised $76,000 to fund dystonia research through fundraisers including the Dystance4Dystonia Cincinnati Zoo Walk, held in September. Phelps is a recipient of the DMRF’s Douglas Kramer Young Advocate Award and has appeared on the national TV show The Doctors to share her family’s story. She recently started the Cincinnati and Northern Kentucky Dystonia Support Group for people with all forms of dystonia, which affects people at all ages and stages of life.

Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. The Dystonia Medical Research Foundation is dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.

The Rare Life Award is an annual program to honor individuals who exhibit courage, leadership, survival, devotion, character, and heroism. Candidates are nominated by friends, family and colleagues. Their stories and photos are posted online at where visitors vote on these inspirational stories.

Phelps was among the top 20 nominees, selected from 259 stories submitted through the Rare Life website. She is one of six runners-up receiving $5,000 to their charities of choice, with each runner-up awarded for embodying a distinct characteristic: Courage, Leadership, Heroism, Character, Devotion, and Survival.

To learn more about the Dystonia Medical Research Foundation, visit