In 1935, the year Rachel Ann Perkinson was born to Clanton and Ellen Perkinson, muscular dystrophy was a mysterious condition that was scarcely understood. The Muscular Dystrophy Association was still 15 years away from creation, and laws protecting the rights of people with disabilities were still four or more decades in the future.
Rachel Ann and her younger brother Leland both were affected by muscular dystrophy. The siblings grew up in rural North Carolina at a time when people with disabilities were expected to live out their lives quietly at home. And so they did. Although highly intelligent, Rachel attended college less than one year before dropping out because of her disability. She never married or had children. Instead, she was completely devoted to helping her family, friends, church and community.
Leland, who died in 1990 at age 53, was affected by limb-girdle muscular dystrophy, a disease that causes muscle weakness in the hips and shoulders. Rachel Ann received a tentative diagnosis of muscular dystrophy when she was about 18, but she never sought further diagnosis or treatment, despite persistent muscle weakness.
Seeing the difficulties faced by his children, Clanton Perkinson decided he wanted to help better the lives of people with muscular dystrophy. Before he died in 1967, he told his family that, after providing for them, he wanted to leave his estate to MDA. And before Rachel Ann’s mother Ellen died in 1999, she told her daughter the same thing.
Rachel Ann took her parents’ desires to heart. When she passed away in 2003 at the age of 67, she left almost her entire estate to MDA. After selling off land and other assets, MDA ultimately received about $6.4 million, the largest single gift in the history of the Association.
In consultation with Mildred Johnson, executrix of the estate and Rachel Ann’s good friend, MDA has used the bequest to construct the 15,000-square-foot Rachel Ann Perkinson Center at the Association’s national headquarters in Tucson, Ariz. In addition, a significant portion of the gift, $1.2 million, will fund vital research into limb-girdle muscular dystrophy.
The Perkinson Center — built to the highest standards of “green” design and energy efficiency, and completely accessible — is the new home of the Association’s research and health care services programs, as well as the legal and public relations departments. It also will house parts of MDA’s world-renowned Art Collection.
“I know Ann would have been proud that her generous gift will provide MDA with the infrastructure and research needed to speed treatments and cures for muscular dystrophy,” said Johnson. “Her father modeled for her respect for MDA and its work. Through her bequest to MDA, Ann has honored his example. In turn, MDA has honored Ann in an especially meaningful way.”
A true gift of hope
Much has changed in the world of muscular dystrophy since Rachel Ann and Leland Perkinson were children. Supportive care, adaptive equipment, educational and employment opportunities have improved a lot, as has society’s attitude toward people with disabilities. Neuromuscular disease research, funded in large part by MDA, has moved forward in leaps and bounds.
In marking the Nov. 17, 2010, dedication of the Rachel Ann Perkinson Center, MDA President & CEO Gerald Weinberg said, “All of us who are associated with MDA and its lifesaving mission are profoundly grateful to Rachel Ann Perkinson, who not only was a devout, compassionate and charitable woman, but also a remarkable humanitarian.”
Bequests to MDA play a vital role in funding the Association’s research and health care services programs. To learn more about different giving options, contact the MDA special gifts and philanthropy department at (800) 223-6011.