Supporters Like You

Read about supporters who are empowering people living with neuromuscular diseases.

DS Domenica Mazzola

Domenica Mazzola

For Domenica Mazzola, loyalty has been one of her most notable characteristics and a point of personal pride.

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For Domenica Mazzola, loyalty has been one of her most notable characteristics and a point of personal pride. She was born in New York and has lived there all her life; she worked as a legal secretary for 45 years, 35 of those years with the same firm; and she has been a long-time supporter of the Muscular Dystrophy Association.

“I remember watching the very first MDA telethon with Jerry Lewis back in 1956,” Domenica said. “It was broadcast from New York City. That first telethon raised $1 million, and back then that was a big deal. Such a huge amount of money! After that, I always watched the telethon each year.”

Though the telethon eventually moved its main broadcast to Las Vegas, Domenica still watched over the years. “Each year of the telethon, I could see the strides MDA was making in the fight against muscle diseases,” Domenica said. “You could see the difference and how things were improving.” That’s why, when she created her estate plans, Domenica decided to include a gift in her will to MDA.

“Since I worked with attorneys my entire career, I was keenly aware of the importance of creating and updating my plans,” Domenica said. “Since I do not have any close relatives, I’ve decided to use my will to leave gifts to charities I care deeply about, including MDA. I want to control what happens to my assets, so that’s why I’ve made this decision.

“Thanks to MDA’s work over the years, life expectancies for people with muscle diseases are much longer. I hope my gift will help kids with muscle disease live even longer, more comfortable lives. And I want people to be as independent as possible.”

Chris Shimon

When Chris Shimon says, “I like to stay busy,” he isn’t joking.

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When Chris Shimon says, “I like to stay busy,” he isn’t joking.

The youngest of five children, Chris started his first business—landscaping and helping seniors with various odd jobs—when he was only 9 years old. “Then I had a paper route, and in high school I was on the track team,” he says.

Now, at the age of 53, Chris is an assistant activities coordinator at a care center for seniors. “When I was young I was always friends with older people, and now working with seniors is my expertise,” Chris says. “I have really enjoyed working here for 12 years because each of my clients is like family to me. I just love helping others.”

His giving nature is also reflected in Chris’ volunteer work in the Cedar Rapids, Iowa community. In addition to his work with the Alzheimer’s Association and other organizations, Chris was an operator at his local MDA Telethon for more than 20 years.

“All the kids I’ve seen during the Telethons really touch my heart,” Chris says. “I volunteered at the Telethons each year because I want to help these kids walk someday.”

Along with his volunteer support, Chris has made a generous gift to MDA in his will.

“I am satisfied my estate plans are in place. I hope my gift will help MDA find a cure for muscle diseases, sooner rather than later. My goal is to help others achieve their goals and MDA’s mission of finding cures is an important one.”

DS Chris Shimon
DS Barbara Graham

Donald and Barbara Graham

Donald Graham retired from the Lakewood Fire Dept. (in a suburb of Cleveland) as assistant chief after 25 years of service.

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Donald Graham retired from the Lakewood Fire Dept. (in a suburb of Cleveland) as assistant chief after 25 years of service. He and his wife, Barbara, have nine children, including two sons who are fire fighters also. Donald and Barbara’s involvement with MDA originated because of the active role their son Scott (Otto) has played in the local MDA Chapter and in raising funds for MDA through the Cleveland Fire Department.

For 20 years, Otto’s commitment to MDA helped increase the fire department’s annual fundraising program from approximately $20,000 to $180,000 through traditional “Fill-the-Boot” drives and charity golf outings. Donald and Barbara were drawn even closer to MDA after losing a very good friend to ALS and learning that MDA is the leader in ALS research.

They would like to be able to make an outright gift to the Association, but they don’t feel they have the means to do so. After careful consideration, they realized that a charitable gift annuity could provide an opportunity for a win-win situation ¦a substantial gift to MDA and security for their future. Their gift annuity not only ensures continued research progress but also provides immediate tax benefits for the Grahams and a fixed income stream for the rest of their lives.

Donald and Barbara Graham made their generous gift in honor of the Cleveland Fire Fighters’ heroic efforts and their long-standing commitment to MDA’s mission, with the hope of providing a brighter future for individuals with neuromuscular disease and their families.

Paul Fafard

Paul Candide Fafard, the youngest of eight children, has experienced a life full of challenges, achievements, recognition, joys, sorrows and most of all, hope.

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Paul Candide Fafard, the youngest of eight children, has experienced a life full of challenges, achievements, recognition, joys, sorrows and most of all, hope. His challenges began early, when his mother passed away just three months after his birth. His father was distraught, and may have partly blamed Paul for her death. His father sent him to an orphanage where he remained for six years before his father reclaimed him.

By the age of 8, Paul was playing violin in the Fafard Family Ensemble with his father, stepmother and five of his siblings, all of whom were talented musicians. The Ensemble appeared in New York City’s Town Hall in November, 1950. Paul’s father was a disciplinarian and task master with all of his children, so as soon as Paul turned 18, he struck out on his own and enlisted in the Army. Because of his musical talents, Paul was assigned to the Army Band. After his service, he worked in the U.S. Post Office and retired after 30 years of service.

During all those years, Paul was never far from his music. He was always composing on his instrument of choice, the piano. In 1987, one of Paul’s compositions entitled “Philadelphia, 1787” was aired on the CBS television special, “We the People . . . The Constitutional Gala.” In 1988, Shirley Jones, Vicki Carr, Gary Morris and the U.S. Naval Academy Glee Club sang some of Paul’s Christmas compositions for President and Mrs. Reagan during NBC’s broadcast of the 7th annual “Christmas in Washington” gala. These have been just a few of Paul’s achievements, which brought him both joy and recognition.

No life is full of only wonderful things. While living in the upper west side of New York City for the last 45 years, Paul has been the victim of eight different muggings, but he is grateful that he has never been injured. Four of Paul’s brothers have passed on, and he too, inherited the heart disease that took his brothers’ lives. These are some of the sorrows Paul has experienced.

Nevertheless, Paul continues to have hope. He considers himself “a work in progress until my last day on Earth.” He hopes to have more music published. He hopes to be alive when MDA’s research produces more treatments – perhaps even cures – for neuromuscular diseases. If he is not alive to see those breakthroughs, Paul has arranged for his hope to live on through the bequest he made to MDA in his Last Will& Testament so that MDA can continue its efforts to eradicate muscular dystrophy and related diseases.

DS Paul Fafard
DS Glen Guttormsen

Glen Guttormsen

Glen Guttormsen knows all too well the daily challenges faced by children with neuromuscular disease and their families.

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Glen Guttormsen knows all too well the daily challenges faced by children with neuromuscular disease and their families. In 1955, his five-year-old son, David, was diagnosed with Duchenne muscular dystrophy. “The doctor told us kids with Duchenne rarely outlived their teenage years,” Glen explains. “It was quite a shock.”

After David’s diagnosis, Glen and his family found support from their local MDA team in San Jose, California. “Right from the start we were active with MDA,” Glen says. “MDA gave us information about the importance of David eating a healthy diet and other ways to help maintain David’s health.”

The entire Guttormsen family supported MDA by volunteering at the local MDA Telethon and summer camp, and raising money through MDA Block Walks in their neighborhood.

David began using a wheelchair at age 11, but that did not stop him from pursuing his passions and reaching his goals. David was sports editor and photographer for his high school newspaper, and went on to attend San Jose State University, where Glen worked for 35 years. David proudly graduated with honors in 1973 before passing a few months later at the age of 23.

Glen, now 91 and living in Medford, Oregon, has continued to support MDA in various ways for the past 60 years, including establishing a fund for Duchenne research. He also included a gift to MDA in his estate plans. “My hope is…that Duchenne is conquered. I am encouraged because MDA has the staying power to make this happen for these kids.”

Roberta Peters

Roberta Peters has been active all her life. She taught physical education and coached students of all ages for 25 years.

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Roberta Peters has been active all her life. She taught physical education and coached students of all ages for 25 years.

Now retired and living in Hawaii, Roberta keeps physically fit by running up the two flights of steps at her home, body surfing and playing Olympic-style badminton.

“To stay in shape you have to do something you love, and I’m in love with badminton. It’s the most fun game I’ve ever played, and it’s a great workout.”

Roberta never takes her good health for granted. In fact, she treasures it probably more than most people because she watched both her mother and aunt live with ALS—amyotrophic lateral sclerosis or Lou Gehrig’s Disease.

“My late aunt was diagnosed with ALS first, and she used a wheelchair and wasn’t able to speak,” Roberta explained. “My mom had bulbar onset ALS, so her speech was slurred and I had to grind her food because she had difficulty swallowing. She also insisted on trying to walk even though she had a limp.”

During the time Roberta cared for her mother before she passed away, MDA was there to help. “MDA provided us with information about her disease and even gave her a scooter when she needed it,” Roberta said. “I’m so appreciative for what MDA did for my mom.”

Because MDA was there for her mother when she needed help, Roberta has made a generous commitment to MDA through her estate plan. As a member of MDA’s Legacy Society, Roberta’s generosity will help accelerate treatments and uncover cures for ALS and other related life-threatening diseases.

“My dream is to end ALS,” Roberta said. This gift in my estate plan, in my mother’s and aunt’s name, is designated for ALS research because I want a cure.”

DS Roberta Peters

“Each year of the telethon, I could see the strides MDA was making in the fight against muscle diseases…”

— Domenica Mazzola

DS Jane Kievit

Jane Kievit

Hope can be defined as “a belief that a desired outcome can be achieved.” Jane Kievit has hope; it has been a common theme throughout her life.

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Hope can be defined as “a belief that a desired outcome can be achieved.” Jane Kievit has hope; it has been a common theme throughout her life. In the spring of 1945, Jane completed her degree at the University of Wisconsin-Milwaukee. She and three friends decided to “go on an adventure” and teach in “some exotic place.” In those days, any move away from home – wherever it was – was a bold, hopeful move. Long Beach, Calif., was the exotic place of choice for these four young ladies, and in the fall of 1945 they began their careers in education there as classroom teachers.

A couple of months later, during the long Thanksgiving weekend in November 1945, Jane met Henry F. “Hank” Kievit, just two days after his discharge from the U.S. Coast Guard.

Hank was the kind of person who believed hard work and a positive attitude could overcome anything. For example, Hank had poor physical abilities, which later in his life would be attributed to limb-girdle muscular dystrophy. Despite his physical challenges, Hank exercised daily to try to build up his muscles. His work paid off when he went back to school on the G.I. Bill and earned a spot on the swim team at the University of California-Los Angeles. Hank went on to become an attorney, undertake a career with the Internal Revenue Service, and start a wise investment strategy for his and Jane’s savings.

Hank and Jane were married for 57 years, until Hank’s death in June 2007. After Hank’s muscular dystrophy diagnosis, he and Jane decided not to have children; she had her classroom full of children, and they both doted on their beagle dogs.

During their years together, Hank and Jane lived life to the fullest. They traveled the world, a hobby they continued even after Hank required a wheelchair for mobility. He had an upbeat, hopeful attitude and never let anything – not even neuromuscular disease – get in the way of what he wanted to do.

In 1982, Hank helped a friend establish a limited partnership which became QUPÈ, a winery on California’s Central Coast specializing in the production of Rhone varietals. Hank helped with the winery’s accounting and even had a hand in choosing the winery’s name. When Hank and Jane retired, they built their dream home on 20 acres near the winery’s vineyards. The 2008 bottling of QUPÈ’s “Bien Nacido Cuvee” was dedicated to Hank, the “Godfather of QUPÈ.” Today, Jane’s energetic beagles, Albert and Dolly, live in the dream home; they let Jane live there too!

To hear Jane speak about Hank, one quickly learns that he was the love of her life and the “King of Hope,” for he never wavered from a belief that with hard work and a positive attitude, a desired outcome always could be achieved. Jane shares that belief to this day. Legacy of Help & Hope Society members have hope too. They believe MDA’s mission to find cures and treatments for muscular dystrophy will be realized one day. Jane became a Legacy Society member by making a gift to MDA via a bequest in her estate plans, and then notifying the Association of her gift intentions. If you already have or are thinking about making a bequest to MDA, then call Jade Bristol-Verity, Esq. National Vice President, Legacy Gifts, at (800) 223- 6011. Your Legacy Society membership is important to MDA’s future!

Hank’s last words to Jane were, “Thank you very much.”

For living a life full of hope, for having a positive attitude and for their belief in MDA’s mission, we also extend our thanks to Hank and Jane!

Lenore Emmanuelli

After a few seconds in the presence of Lenore Emmanuelli, one immediately thinks of the phrase “larger than life.”

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After a few seconds in the presence of Lenore Emmanuelli, one immediately thinks of the phrase “larger than life.” And after meeting this colorful, caring human being with blue eyes and a magnanimous smile, everyone becomes an instant friend.

Lenore gained our attention when she called MDA’s South Florida office to ask for the Association’s correct name and the legal language needed to include MDA in her estate plans. Getting to know our Legacy members is a special experience for all of us at MDA, so Lenore’s inquiry triggered a follow-up call from MDA’s local Director of Special Gifts & Philanthropy. The call was followed by a personal visit, and Lenore was eventually presented with MDA’s Legacy of Help and Hope certificate.

Through phone calls and personal visits, MDA learned that Lenore was born and raised in Brooklyn, N.Y. Like many of us, Lenore recalls watching the Jerry Lewis MDA Telethon year after year on Labor Day weekend. More importantly, Lenore remembers that her family always made a gift to MDA by sending a check. For Lenore, her family’s example translated into a lifelong practice of giving to and helping others.

After Lenore’s husband passed away, she knew she needed to revise her will. While working out the details of a revised estate plan, Lenore developed a strong friendship with a person who currently struggles with myotonic muscular dystrophy, one of the nine forms of muscular dystrophy in MDA’s program.

Over time, Lenore watched the disease progress, and witnessed its devastating effects on her friend’s physical and emotional health. For Lenore, the effects were heartbreaking. But, true to form, this larger-than-life person opened her heart and decided to play an important role in fighting neuromuscular diseases. In honor of her friend with myotonic MD, Lenore made the ultimate gift by naming MDA a partial beneficiary of her estate.

Winston Churchill once said, “We make a living by what we get, but we make a life by what we give.” If Lenore and Winston Churchill were contemporaries – and Lenore is very quick to point out that they were not – Mr. Churchill easily could have been describing Lenore!

Lenore invites you to join her in providing hope for those children and adults with neuromuscular diseases. Make a bequest to MDA through your estate plan. Your generosity will enable MDA to continue its fight to eradicate neuromuscular diseases.

DS Lenore Emmanuelli
DS Sharon Shepherd

Sharon Shepherd

Living with a muscle-debilitating disease is never easy for a child. For Sharon Shepherd, a young African-American girl growing up in the early 1950s, it was especially challenging.

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Living with a muscle-debilitating disease is never easy for a child. For Sharon Shepherd, a young African-American girl growing up in the early 1950s, it was especially challenging. “[As a child] I was never able to run and navigating stairs was always difficult,” Sharon said. “I wasn’t officially diagnosed with spinal muscular atrophy until I was a young adult. It was then MDA came into my life.”

After Sharon’s diagnosis, she found helpful resources through MDA by attending a local support group, watching the MDA Telethon and visiting an MDA Care Center. “MDA has always provided the assistance and support I need. That immediate help is so important,” Sharon said.

Thanks to her determined spirit, Sharon went on to serve as an Administrative Assistant to four directors of a local community center, the head librarian of a local college and later to own a temporary staffing agency. Sharon currently serves on the Advisory Board of the Booker T. Washington Community Center/YMCA and is President of the Deacons’ and Ministers’ Spouses group at her church.

Sharon and Bill, her husband for 46 years, have one son and two grandsons. Always looking for a new challenge and something to keep her occupied, Sharon is currently seeking new employment. She firmly believes, no matter the age or condition, “a mind is a terrible thing to waste.” Arthur Fletcher, former head of the United Negro College Fund, coined the well-known phrase.

Sharon wants to continue to help transform the lives of kids and adults living with life-threatening diseases. That’s why she has included MDA in her estate plan—to help improve the lives of families for generations to come. “Funding is needed for both research to find cures and to help people living with muscle disease go about their everyday lives. I hope my gift will help MDA with both research and advocacy.”

Dr. Robert Edgar

Dr. Robert Edgar is full of surprises. This native of Oklahoma is a mild–mannered gentleman whose outward appearance is that of a distinguished professor.

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Dr. Robert Edgar is full of surprises. This native of Oklahoma is a mild–mannered gentleman whose outward appearance is that of a distinguished professor.

In fact, Bob Edgar is not only a distinguished professor, he is also the director of graduate studies for the Department of African Studies at Howard University in Washington D.C. (a historically black university). His work and research has focused on South Africa, where he has spent a great deal of time during the last four decades. A prolific author in his field, Bob has been the recipient of numerous professional awards and recognitions. The New York Times even branded Bob Edgar as the “Indiana Jones of South Africa” based on his exciting historical investigations of southern Africa’s political and religious history, and his quest to return the remains of a South African prophetess from her unmarked pauper’s grave back to the village that had been her home.

Bob’s love of Africa, its history, and its people is also deeply personal. While spending time in the country of Lesotho, he met a young boy named Leteanne who had been diagnosed with osteogenica imperfecta, or brittle bone disease. Bob later arranged to legally adopt Leteanne and brought him to live in the United States, where he is thriving.

Around the age of 6, Bob was diagnosed with Charcot–Marie–Tooth disease (CMT). Two of his three brothers also have been diagnosed with CMT, and therefore MDA has been part of his family since his childhood. Despite his CMT, Bob describes himself as having lived a full life, and after hearing just a few stories of his adventures in Africa, it is clear that is an understatement.

Bob knew that he wanted to leave a gift to MDA through his estate plan for a long time, but he was unsure of exactly what type of gift he wanted to make. He was also unsure how to make it. While attending an MDA–sponsored educational seminar called Estate Planning for Families with Disabilities, Bob learned what he needed to do to create the right kind of estate plan for himself and his son, and how MDA could be a part of that plan. With the help of a local attorney, Bob created a special needs trust that will provide for his son as part of his overall estate plan. Bob also generously named MDA as a residual beneficiary of his son’s special needs trust.

As a member of MDA’s Legacy of Help & Hope Society, Bob has created an estate plan that ensures financial support and care for his own special–needs son, and a gift that will enable MDA to continue funding cutting–edge research into treatments and cures for neuromuscular diseases.

Please join Bob as a member of MDA’s Legacy of Help & Hope Society by creating a bequest to MDA in your Will, or by giving another type of special gift such as a life insurance policy, or a charitable gift annuity.

DS Robert Edgar
DS Linda Durisek

Linda Durisek

A devoted mother of three sons, and a doting grandmother to five beautiful grandchildren, Linda “Scotty” Durisek, has a soft spot in her heart for kids and a willingness to help whenever she sees a need.

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A devoted mother of three sons, and a doting grandmother to five beautiful grandchildren, Linda “Scotty” Durisek, has a soft spot in her heart for kids and a willingness to help whenever she sees a need. Scotty first became involved with MDA through her employer, Jack Gaughen Realtor ERA, in Harrisburg, Penn. It was at an MDA event sponsored by her employer that Scotty first met one of the families served by MDA, which touched her heart deeply. Since then she has helped organize and support many different fundraising events for MDA, including a company picnic and golf tournament.

A native of Nova Scotia, Scotty has never hesitated to become involved in her community or to give help to others in need. From leading scouting troops, to serving on the boards of various charities, to simply bringing groceries to an unemployed acquaintance who couldn’t afford food, Scotty is always there to make a difference in the lives of people in her community. She enjoys participating in many local volunteer activities and has a special affinity for helping children. MDA is an important charity to support, according to Scotty, “because of all the good the Association does for the kids.”

It is no surprise that when Scotty decided to make a gift to MDA by purchasing a life insurance policy and naming MDA as the beneficiary, that she actually found a way to do two good deeds at the same time. Not only did she do something good by making MDA her life insurance beneficiary, but she also purchased the policy from a friend who sold life insurance and who was desperately in need of making a sale. By naming MDA as a beneficiary of her life insurance policy, Scotty will help MDA find better treatments and cures for neuromuscular diseases, all without distributing any of her current income or assets.

As a member of MDA’s Legacy of Help & Hope Society, Scotty has ensured that her lifelong tradition of helping others can continue beyond the end of her own life. Please join Scotty as a member of MDA’s Legacy of Help & Hope Society by naming MDA as the beneficiary of a life insurance policy, or by giving another type of special gift such as a bequest from your estate or trust, or a charitable gift annuity.

Sandra Daniels

Joseph Daniels emigrated from Persia (now known as Iran) in 1927, at the age of 14. His family moved from Detroit to Chicago…

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Joseph Daniels emigrated from Persia (now known as Iran) in 1927, at the age of 14. His family moved from Detroit to Chicago, where he met and married his wife, Florence, who also had emigrated from Persia.

A hard-working accountant who loved to play violin, Joseph always put his family first. In the summer of 1954, he took the family on a vacation to Turlock, Calif., so his children could visit their grandparents – Joseph’s parents – who had retired there.

Sandra, the oldest of Joseph’s four daughters, remembers traveling cross country in the Super Chief, the flagship of the Atchison, Topeka and Santa Fe Railway. In its day, the Super Chief set the standard for luxury rail travel in the U.S. Sandra remembers the luxury, but sadly, she also remembers tragedy associated with the trip. Her 17-month-old brother died in an accident during the vacation.

A second tragedy struck the family in October 1972, when Joseph received a diagnosis of ALS (amyotrophic lateral sclerosis), a disease that causes near-total paralysis and death, usually within five years of diagnosis.

Toward the end of her father’s life, Sandra fed and washed and cared for him nearly full time. One day, she recalls, she was unable to fight back tears while caring for him. But Joseph, always the strong one, said to her, “Do not despair; there is nothing you can do.” At once, Sandra realized her father was resigned to his fate. Joseph, who never complained about his condition, quietly passed away from complications of ALS in January 1974, just 15 months after diagnosis. More than three decades have passed since then, but Sandra has never forgotten the effect of the disease on her father, on her, or on the rest of her family. She vows, “The three words “amyotrophic lateral sclerosis” are the three ugliest words I know; I hate ALS!” It was devastating for her to watch her relatively young, vibrant, healthy, handsome father become trapped in a body that would no longer work.

In many ways, Sandra takes after her father. She too is vibrant, healthy and hard-working. Sandra works both as an administrative assistant for a software consulting firm and as a rental property manager, helping tenants resolve problems. In other words, Sandra helps people – helping others is what motivates her.

In memory of her father, Sandra wanted to make a gift restricted to ALS research. She wanted the gift to be from her estate after death, but she wasn’t sure how to make those plans.

Then a close friend reminded her about MDA. Sandra got in touch with the Association’s Special Gifts and Philanthropy Department, where she received the guidance she was seeking, and made arrangements for a gift in memory of her beloved father, Joseph Daniels.

Sandra’s gift most definitely will help other people. This is her legacy. What will your legacy be?

DS Sandra Daniels

“MDA has always provided the assistance and support I need. That immediate help is so important.” 

— Sharon Shepherd

DS Robert Cooper

Robert Cooper

Robert “Coop” Cooper has spent a lifetime helping others. He’s busier now on a typical day in retirement than he ever was in his 31 years as an AT&T data communications technician.

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Robert “Coop” Cooper has spent a lifetime helping others. He’s busier now on a typical day in retirement than he ever was in his 31 years as an AT&T data communications technician. In fact, membership in AT&T’s Pioneers, a group dedicated to volunteerism, opened up a new world of opportunities for Bob when he retired.

Coop was born 68 years ago in Detroit, Mich. His father worked for U.S. Tire & Rubber Co., and his mom operated a style salon in their home, where many of his female classmates came to have their hair done. Coop’s parents attended church on a regular basis and were always ready to lend a helping hand to those in need. They led by example and those values became a part of who Bob Cooper is today.

Interestingly enough, Coop was born into a family with strong ties to the old Bell Telephone Co., which later became known as American Telephone & Telegraph (AT&T). His grandmother was a switchboard operator and gave birth to Bob’s mother in the telephone office where she worked. Bob’s uncle was a telephone lineman for the county.

Before settling into his career with AT&T, Coop took computer programming classes at Henry Ford Community College and did a four-year stint in the U.S. Air Force as a jet engine mechanic. When AT&T transferred him to Georgia, Coop volunteered with the International Horse Park, earning him AT&T’s “Employee of the Month” award. His volunteerism soon expanded to the Charlie Elliot Wildlife Center in Mansfield, Ga.; the 1996 Atlanta Summer Olympics (as table tennis coordinator); his church; and local youth organizations.

Currently, Coop is a member of a volunteer group called “God’s Hope Builders.” The group builds churches and wheelchair ramps and Coop’s “Stick Work” crew also has volunteered for Habitat for Humanity. Coop’s construction skills are used by his church’s Building and Grounds Committee as well. Coop quietly fills each day to the brim by helping others, reserving each Thursday for his local horse rescue and rehab center. By the time this story goes to print, Coop and Hope Builders will have helped build a Family Life Center addition to a church in Cordele, Ga.

Everyone needs to have a person like Coop in their lives so they can see how much one set of helping hands can accomplish for the greater good.

Support of the annual MDA Labor Day fundraising show (previously called the Telethon, now renamed MDA Show of Strength) was a tradition with the Cooper family, so it isn’t a surprise that Coop has volunteerism in his blood. As a single man with no children of his own, Coop developed a strong compassion for the children featured on the MDA show over the years. As he explained, “Those wonderful kids and adults had no say in their disease. They often faced insurmountable challenges. ‘Jerry’s Kids’ became my kids.”

Coop has led a lifetime of servant leadership, and his bequest to MDA is just one more example of how a servant leader provides help and hope not only during his or her lifetime, but also after death. Coop’s decision to make a bequest to MDA demonstrates “leadership by example” and he hopes others will follow in his footsteps to ensure that MDA’s research and medical services will continue to offer help and hope until the day comes when everyone will have a chance to live life free of muscle disease and their resulting physical challenges.

Coop’s legacy gift to MDA will mean we can continue to advance promising research that will result in “building healthy muscles” for generations to come.

Rosemarie Walrath

One of MDA’s mantras is: “Disability does not diminish ability or creativity.” Time and time again, we hear stories…

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One of MDA’s mantras is: “Disability does not diminish ability or creativity.” Time and time again, we hear stories about people who’ve been handed the “disabled card,” only to see them toss it aside and achieve greatness. A good example is Stephen Hawking, the theoretical physicist whose world-renowned scientific career spans more than 40 years. His books and public appearances have made him an academic celebrity. Hawking has amyotrophic lateral sclerosis (ALS), a condition that has progressed over the years and left him almost completely paralyzed. And yet, his celebrated work continues.

Rosemarie Walrath is a strong woman who almost single handedly raised two sons, both of whom had Duchenne muscular dystrophy (DMD), a progressively debilitating disease that shortens life span. Daniel (1960-1989) and Brian (1961-1987) accomplished great things during their lifetimes because Rosemarie refused to permit herself or her sons to believe that they could not do something because of their disease. Rosemarie was a source of hope for her two sons; they lived their lives with the knowledge that DMD did not diminish their abilities or their creativity, it just made their accomplishments more difficult to achieve.

Rosemarie taught her sons that they could accomplish anything they wanted, limited only by their imaginations. She has written and self-published a book about raising sons with DMD, called My Two Sons. In it, she chronicles the trials and triumphs of Daniel and Brian, while at the same time detailing the progression of DMD. A limited number of books are still available, for the asking and the costs for shipping and handling.

Rosemarie has made a bequest to MDA through her last will and testament, and is a member of our Legacy of Help & Hope Society. When meeting with Rosemarie, one gets a sense of calm from the way she lives her life. She gains pleasure from simple things, like the beauty of the flowers produced by her collection of cacti or the artwork created by her sons.

Rosemarie knows the power of Hope. It is what enabled her to persevere while raising her boys with love and dignity.

DS Rosemarie Walrath
DS Josephine Neff

Josephine Neff

Some 30 years ago while in her thirties, Josephine Neff of Franklin, Wisconsin began to experience weakness in her lower extremities and difficulty in managing stairs, resulting in an eventual fall.

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Some 30 years ago while in her thirties, Josephine Neff of Franklin, Wisconsin began to experience weakness in her lower extremities and difficulty in managing stairs, resulting in an eventual fall. That year, while watching the MDA Telethon, it occurred to her that she might be affected by muscular dystrophy. After seeing several doctors and a neurologist, she was diagnosed with LGD, limb-girdle muscular dystrophy.

Although the disease has challenged her for most of her adult life, she was able to continue working at a major newspaper in Milwaukee until her retirement in 2002. Like many other individuals, Josephine readily admits to Mattie Stepanek’s influence on her life for his incredible attitude and courage. During a very successful career she took advantage of the opportunity to purchase company stock to supplement her income and to enhance her future.

Her generosity and commitment to MDA has been reflected in numerous donations over the years. When she learned about charitable gift annuities, she found another way to make a larger gift to the Association, to continue to help others, and to increase her own financial security. By donating a portion of her securities to MDA, she qualified for a significant capital gain deduction and now receives a guaranteed, monthly return on her investment for the rest of her life.

Josephine hopes that her Charitable Gift Annuity with MDA will help to fuel the fight against neuro-muscular diseases and to ensure a better future for generations to come.

Judy Kaszas

Judy Kaszas is one of the newest members of our Legacy of Help & Hope Society, but she’s no stranger to MDA.

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Judy Kaszas is one of the newest members of our Legacy of Help & Hope Society, but she’s no stranger to MDA. Judy’s desire to help MDA started decades ago when she was a child and met “Dickie,” the baby son of one of her mother’s friends. She couldn’t understand why the child couldn’t walk and support himself like others. Judy’s mother explained that “Dickie” was sick, and that money was needed to help find a cure.

That’s all Judy needed to hear. She started a lifetime of helping MDA. Judy collected “nickels and dimes” on the street corner to deliver to the local MDA Telethon’s “Wishing Well” every year. When she was old enough, Judy began volunteering at the Telethon and has been doing so for the last 25 years.

Judy relayed a story about the location of her local Telethon and how it has changed several times over the years. Since Judy doesn’t drive, she uses public transportation to get to the Telethon location so she can fulfill her volunteer commitment to MDA. Judy, who doesn’t mind the location changes, says “I’ll do whatever it takes to get to Telethon so I can do my work for Jerry’s Kids. Besides, since the Telethon is always over the Labor Day weekend, public transportation has reduced fares on holidays, and I consider that a bonus!”

Judy also has found other ways to help MDA. She recruits her friends to join her as event volunteers, and she volunteers at other MDA events such as MDA’s Muscle Team event in New York.

Recently, Judy found one more way to assist MDA. She realized that by making MDA a partial beneficiary of her estate, she can make the ultimate gift without distributing any current income or assets. Upon completion of her estate plan, Judy said: “I can’t imagine my money doing more good than it can in the hands of MDA. My estate isn’t big, but I’m doing my part to help find a cure!”

Like other Legacy Society members, Judy hesitates to accept gratitude. “I am not a hero,” she says. “Everybody should be doing something to help other people. This is the way the world should be.”

Now there’s a message that’s worth repeating! Please take Judy’s advice, and join her as a member of MDA’s Legacy of Help & Hope Society. Judy Kaszas is a hero in MDA’s eyes, and you can be one too! Please let us know if you make MDA a beneficiary of your estate, and we’ll make sure that your gift is used to help find treatments and cures for neuromuscular diseases.

DS Judy Kaszas
DS Roseann Van Duren

Roseann Van Duren

Roseann Van Duren has a reluctant, but necessary, relationship with the Muscular Dystrophy Association (MDA).

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Roseann Van Duren has a reluctant, but necessary, relationship with the Muscular Dystrophy Association (MDA). It began about 40 years ago when her brother, Michael D’Antonio, received a diagnosis of Duchenne muscular dystrophy (DMD). Roseann remembers the difficult times experienced by her brother and entire family as Michael’s muscle weakness grew progressively worse, leading to his reliance on a wheelchair for mobility, then to his need for constant medical care, and finally to his death from complications of DMD.

You might think that when Michael passed away, Roseann’s relationship with MDA would have ended, or at least moved to a less-involved level. But you would be wrong. Instead, Roseann’s relationship with MDA intensified with the discovery — more than 20 years ago — that her son, Joey, was affected by DMD. One of Roseann’s sisters also gave birth to a son with DMD.

With new testing procedures developed through MDAsponsored research, Roseann and her sisters discovered that they all are carriers of the gene that causes DMD — in other words, DMD runs in their family. Roseann says, “All was not ‘doom and gloom’ during Michael’s and Joey’s lives. I recall several summers when Uncle Michael and Joey actually attended the same MDA summer camp together. MDA’s summer camp was always the highlight of the year for them.”

She remembers how they both looked forward to being with others with disabilities in a loving, caring and understanding environment; to having fun; and to getting away from all the difficulties of day-to-day life in a society that could be, at best, indifferent and at worst, cruel to people affected by neuromuscular diseases.

Roseann and her husband David, a retired, disabled Navy veteran who served two tours of duty in Vietnam, fondly remember the camaraderie and caring that they too experienced when they attended an MDA support group for parents of children with muscular dystrophies. They enjoyed being able to “be themselves” among knowing, caring, nonjudgmental peers who were living their lives as caregivers just as they were.

David and Roseann want you to know that they looked forward to attending MDA’s support group because it gave them the strength they needed to learn about Joey’s steadily deteriorating condition. They also want you to know that MDA was a constant, comforting companion that provided both help and hope to their family during the most difficult times.

In March of this year, at the age of 25, Joey passed away, just as his Uncle Michael had, from complications of DMD. With intense emotion and choking back tears, David and Roseann say, “We need MDA to find a cure. We need MDA to help stop the suffering.”

David and Roseann continue to have hope. They want you to know that they’re making a bequest to MDA so we can continue our efforts to find treatments or a cure for DMD and other neuromuscular diseases.

David and Roseann want you to consider making a bequest too! With more bequests, MDA will be able to fund more world-class research. With more research there is more hope, because we’ll move closer and closer to the day when there are treatments and cures.

MDA’s future is in your hands. Join David and Roseann as members of MDA’s Legacy of Help and Hope Society soon.

Pat Riley

If you would like to see what a leprechaun grin looks like, you only need to meet Pat Riley of Hobe Sound, Fla.

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If you would like to see what a leprechaun grin looks like, you only need to meet Pat Riley of Hobe Sound, Fla. For more than 14 years Pat has been an MDA office volunteer, summer camp sponsor, Telethon volunteer, generous donor and most recently a Legacy Society member. You might ask yourself how a Detroit native — an only child of devoted parents and a retired Bell Telephone employee — developed an interest in and commitment to MDA’s mission of finding cures and treatments for neuromuscular diseases.

The story began at Patricia Lee Riley’s birth. She was delivered with the use of forceps that damaged important motor nerves. Pat was left with a partially paralyzed right arm and weakened right leg. Because of these physical challenges, Pat grew up attending school, summer camp and other programs with children living with various physical disabilities.

Pat experienced 12 years of corrective orthopedic surgeries, but she chooses to recall good memories from those years. At age 5, she remembers being the youngest camper at Camp Grace Bentley on Lake Michigan, where she was given a doll and enjoyed swimming, arts and crafts and songs around the bonfire. Pat also remembers boat rides on the Detroit River, annually sponsored by the Rotary Club.

After high school graduation, Pat’s first job was with the Merrill Palmer Nursery School, where she provided clerical support to the staff psychologist. Then Pat enjoyed a 29-year career with Michigan Bell Telephone Company, working in their engineering, construction, fleet and installation departments.

In 1981, Pat retired to Hobe Sound, Fla. But she didn’t really retire — Pat started a career of volunteering. First she volunteered for the Hobe Sound Ambulance Company for 18 years. Then she volunteered for MDA for 14 years.

Pat’s association with MDA began when friends invited her to join them at the local broadcast of the Palm Beach County MDA Telethon in 1998. Later that year Pat attended the Children’s Holiday Party; one event led to another and Pat began volunteering at her local MDA office. After attending MDA summer camp the following summer in Bradenton, Fla., Pat was totally hooked on MDA’s mission.

Pat helped in so many ways. She sponsored the camp Tshirts for the kids and counselors. She also sponsored disposable cameras and camp auction items. Since that first telethon, Pat has become friends with many MDA family members, and her generosity extended into other areas in the Association.

Because Pat learned to successfully use her right hand, adjusted to a wedge in her right shoe, attended special schools and camps, learned to drive a car and perform all the daily tasks at work and home, she has a very personal empathy for others experiencing physical difficulties.

Because of her own challenges, Pat has always thought about ways she could help others with challenges of their own. She consulted her financial, legal and insurance advisors. They suggested ways she could support her favorite charities and realize tax advantages at the same time.

Pat’s devotion and commitment to MDA’s mission were again witnessed when she recently told us that MDA would receive a bequest from her estate. Providing help for future generations, ensuring the continuation of extraordinary research, and just plain helping others is part of the fabric of Pat’s life and legacy. MDA is very grateful to have this special “Irish guardian angel” as a member of our family.

A true sense of friendship and family exist between Pat and everyone she touches. She remembers every one and follows them on Facebook if they have a home page. While she doesn’t travel much anymore, Pat follows MDA all over the country via the Internet. In true Irish fashion, Pat Riley says:

“These things I warmly wish to you, Someone to love,
some work to do, A bit o’ sun, A bit o’ cheer,
And a guardian angel always near.”
— Irish saying

DS Pat Riley

“We need MDA to find a cure. We need MDA to help stop the suffering.”

— David and Roseann Van Duren

DS Rose Pfister

Rose Pfister

Rose Pfister is the kind of person who chooses to view a glass of water holding half its capacity as half full, not half empty.

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Rose Pfister is the kind of person who chooses to view a glass of water holding half its capacity as half full, not half empty. She chooses to help others less fortunate, explaining her outlook on life this way: “If you get something, whether you’ve worked for it or not, then you should also give something in return because God keeps pretty good records.”

Rose says she’s learned over the years that people never know when or how they’re affecting another’s life. For example, one summer day 80 years ago, Rose was a typical insecure, self-conscious, 14-year-old swimming with friends at the local public pool. On that day, a handsome young lifeguard singled her out of her group of friends by shouting, “Hey you, the girl with the good legs, come over here. I want to meet you.”

With the way our society has changed in the last 80 years, that same shout from a lifeguard today might evoke loud gasps or worse. But Rose, who remembers it as if it were yesterday, says that on that day that lifeguard made her feel like a “million bucks!” The moral of her story: “One should be nice all the time because living life in such a manner will pay dividends that you may never even know about.”

In her younger days, in order to have a second income, Rose and her husband were in the entertainment business. When Jerry Lewis asked entertainers to support “his kids” with muscular dystrophy and related diseases, Rose found it an easy and gratifying thing to do. As a matter of fact, Rose has been helping MDA by making donations for more than 50 years! She is one of MDA’s most loyal donors.

A visit with Rose is like going to wisdom school. For example, when she suddenly lost her sight 50 years ago, she says she tried for days to come up with just one good thing about being blind. It was a struggle. Finally she realized that when she lost her sight, she also lost the ability to see dirt. She decided that this made her very happy because she never was a very good housekeeper, and now she had a good excuse for a little dust here and there! Rose’s donations provide “Help” to MDA. Rose’s wisdom provides “Help” to those who listen. How do you provide “Help?”

Rick Levy

Rick Levy, entertainer, songwriter and president of a full-scale personal representation company, says, “I’ll never forget watching my first MDA Labor Day Telethon in 1966.

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Rick Levy, entertainer, songwriter and president of a full-scale personal representation company, says, “I’ll never forget watching my first MDA Labor Day Telethon in 1966. I gave a $5 donation and haven’t missed a year since.” That makes Rick a loyal donor in anyone’s book. Rick’s philanthropic spirit recently came full circle when — after a lifetime of giving — he decided to make the ultimate gift by including MDA in his estate plans. By making a bequest and telling MDA about his plans, Rick has become one of the newest members of MDA’s Legacy of Help & Hope Society.

Born and raised in Allentown, Pa., Rick’s successful music career started in high school with the creation of his own garage band, “The Limits.” After graduating from the University of Pennsylvania, Rick found a way to combine his love of music with his keen interest in the welfare of children by producing music education videos and other optional teaching aides for middle school students. He later went on to become the lead guitarist and bandleader for Herman’s Hermits, starring Peter Noone. In his current role, he is the musical director for such outstanding ’60s artists as Jay & the Techniques, Tommy Roe and Freddy Cannon.

These days, Rick is the proud father of Jonah, 35, a successful special-effects artist, and proud grandfather of 5-year-old Brayden, with another grandchild due in December. When not touring, Rick enjoys spending lots of time at the beach near his home in St. Augustine, Fla., and cherishes the value of family and simple pleasures. “Ever since I was young, I’ve always thought about the value of medical research and the importance of good health care,” he says. As a phone bank volunteer for his local MDA Telethon, Rick learned at an early age about the difficulties experienced by people living with muscular dystrophy. He learned that there were kids and adults in his own community who looked to MDA for answers, hope and help.

This early awareness, coupled with his respect for medical research, prompted Rick to give according to his ability to do so. As his career flourished and his income increased, so did the amount of his donations. Rick also visited MDA summer camp, was a Telethon star board sponsor for many years, and regularly followed advances in neuromuscular disease research.

Loyal donors like Rick Levy almost always make bequests through their estate plans in order to continue supporting missions close to their hearts. Rick’s bequest to MDA is his way of ensuring better treatments and cures beyond his lifetime. Like any good father, he wants to see every child enjoy a healthy and happy life — just like the ones enjoyed by his son Jonah, daughter-in-law Michelle and grandson Brayden.

Join Rick as a member of our Legacy of Help & Hope Society. Please consider making a bequest to MDA.

DS Rick Levy
DS Marilyn Melton

Marilyn Melton

Since the first broadcast of the Jerry Lewis Labor Day Telethon in 1966, Marilyn Melton of Minnesota has been a loyal Telethon viewer and supporter,…

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Since the first broadcast of the Jerry Lewis Labor Day Telethon in 1966, Marilyn Melton of Minnesota has been a loyal Telethon viewer and supporter, and has been touched by the stories of individuals and families who have been affected by neuromuscular disease, especially the children.

Her love and concern for children has been reflected in all aspects of her life. As a mother of two preschoolers in the early 70’s, Marilyn brought four more children into her home to begin a home day care. Over the years, she advanced her career as an early childhood specialist and certified vocational teacher, taught early childhood development to adults, and served on the committee for the revision of state certification standards for group family day care throughout Minnesota.

Marilyn’s connection to MDA became even more personal when she “met” Mattie Stepanek on the Telethon. She followed him through his television appearances with Oprah and Larry King and through the wisdom of his poetry and short stories. Already a fan of Billy Gilman, she was overwhelmed with joy when Mattie and Billy partnered on Telethon and in Music through Heartsongs.

In addition to regular gifts to the Association, Marilyn has made provisions in her estate plans to benefit the MDA and its Summer Camp Program. Having impacted the lives of children for decades, she hopes her bequest to MDA will continue her legacy of changing lives for the better and of helping to free the world of neuromuscular disease.

Marilyn’s favorite quote:
“100 years from now it will not matter what kind of house you lived in, what car you drove, or what clothes you wore: the thing that is most important is that I was important in the life of a child.”

Rosealie Lesser

Members of MDA’s Legacy of Help & Hope Society are people who will help MDA even after they’ve passed away.

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Members of MDA’s Legacy of Help & Hope Society are people who will help MDA even after they’ve passed away. Legacy Society members have taken two very important steps:
1. They’ve made a deferred gift to MDA such as a bequest or a charitable gift annuity, and
2. THEY’VE TOLD US ABOUT THEIR GIFT INTENTIONS!

Rosealie “Roz” Lesser is a new member of our Legacy Society, but she isn’t new to MDA. In fact, Roz and her husband attended their very first MDA special event, a gala, in 1994. The event was called “The 12 Days of Christmas” and included an auction. Roz, who is an avid Florida State University (FSU) Seminole football fan, was the high bidder on an autographed football from the Seminoles’ 1993 national championship season.

While enjoying the excitement of the gala and buying the autographed football, Roz’s husband turned to her and said, “MDA is a great organization, and we need to help it.” Roz agreed. Since then, she’s never stopped helping MDA. As a matter of fact, one could say Roz is as passionate about her volunteer work for MDA as she is about her FSU Seminoles &nash; we’re talking “fanatic!” You see, Roz immediately volunteered to help with the same gala that she and her husband had just attended as donors. That wasn’t enough for Roz; she also volunteered to help her local MDA office. While in the office, Roz met and befriended several of Jerry’s Kids &nash; children and adults with neuromuscular diseases. During those years as an office volunteer, Roz realized she could do more to help MDA.

To Roz, “doing more” meant two things:
1. more volunteering, and
2. making a significant bequest via her estate plan.

“More volunteering” involved the Telethon. Roz’s decade of dedicated support during Telethon is unsurpassed. To this day, she provides the coffee, tea and juice service for those involved with her local Telethon. Roz has been asked on many occasions to go on-camera during the Telethon to represent her fellow volunteers and ask viewers for more financial support.

When Roz goes on TV and asks others to contribute to MDA, she does so from a position of great integrity. You see, Roz has created an estate plan. She has named MDA as one of the beneficiaries of her estate. Roz has made the “ultimate gift” to MDA, and when asked why, she has three responses.

“You get an incredible feeling when you give.” “I could not live in good conscience if I spent all my assets on myself instead of giving them to my beneficiaries.”

“If my bequest will enable just one child with muscular dystrophy to live a more comfortable life, then I will feel whole.”

DS Rosealie Lesser
Herb Davida Aronoff

Herb and Davida Aronoff

Herb and Davida Aronoff have been viewers of the Jerry Lewis MDA Labor Day Telethon for many years.

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Herb and Davida Aronoff have been viewers of the Jerry Lewis MDA Labor Day Telethon for many years. Herb’s diagnosis of CIPD, a rare neurological disorder, has made him empathetic to children affected by neuromuscular disease and the importance of ongoing research.

In 2003, after reading more about Jerry’s Kids and MDA, and with a lot of thought and prayer about the best way to help, the Aronoffs chose to give to MDA. At the same time they met one of Jerry’s Kids, Lorinda. This meeting helped them realize the impact they could – and did – have on even just one child, and was the impetus behind their choice to make further gifts to the Association.

They decided to use the charitable gift annuity as the vehicle for a planned gift. Their gift choice was driven in large part by the progression of Herb’s disease and their desire to guarantee Davida’s well-being. “The annuity was a vehicle that helps us, and helps you [MDA], since it is very difficult to do an outright donation in our position,” says Davida.

Philanthropy is a fundamental principle in the Aronoff household. “It is our duty to try and help, as much as we are able to, those less fortunate than ourselves,” says Herb. To be sure that their philanthropic investment was being placed with an organization where it would truly make a difference, the Aronoffs took the time to research how MDA spends its money, and discovered that the Association’s practices are guided by standards of the American Institute of Philanthropy and the Wise Giving Alliance of the Better Business Bureau.

With the knowledge and reassurance that their gifts are being used wisely, the Aronoff’s philanthropic spirit continues, and they look forward to the summer and sending a child to MDA summer camp.

The Aronoffs live by a philosophy of giving. Says Herb, “Tomorrow morning, when you wake up, find someone less fortunate than yourself, and help in whatever fashion you are able to do so.”

Dorothy Bursey

What a pleasure for MDA to re-establish a relationship with Dorothy Quinn Bursey! Dorothy is no stranger to MDA.

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What a pleasure for MDA to re-establish a relationship with Dorothy Quinn Bursey! Dorothy is no stranger to MDA. As a matter of fact, you could call Dorothy a “walking history book” of all things MDA related. She remembers wonderful details about MDA annual meetings in the 1950s. She recalls meeting Jerry Lewis and Paul Cohen (MDA’s co-founder and first president).

In the late 1950s, Dorothy and her husband, Reese “Buck” Bursey (now deceased), founded the Mid-Columbia (Washington state) Chapter of the Muscular Dystrophy Association of America, as MDA was known in those days. Dorothy and Buck recruited friends and neighbors to help raise funds to support research, programs and services for those with neuromuscular diseases.

In an October 1957 letter Dorothy wrote to President Dwight D. Eisenhower about MDA’s historical beginnings when five families with children with muscular dystrophy banded together to do something to try to find treatments and cures. The efforts of these five families eventually resulted in the creation of the Muscular Dystrophy Association of America (MDAA) in 1950. Dorothy spoke of “the fighting, independent spirit of America burning as brightly in 1957 as it ever did before.”

Dorothy received a response from Eisenhower’s office written by Walter Williams, undersecretary of commerce. Mr. Williams spoke admiringly about Dorothy and others who had taken up the fight against muscular dystrophy. He wrote that it was both heartwarming and truly inspirational that there were people “… who refused to accept the prevailing medical fatalism about the disease …”

In 1959, while volunteering for the Mid-Columbia Chapter, and with a operating budget of $497.30, Dorothy and her team raised over $12,000 by setting out coin canisters at businesses and doing house-to-house March Campaigns during the cold, snowy months of winter – quite a return on investment! Adjusted for inflation, this equals $87,500 in today’s dollars. Under the Burseys’ volunteer leadership, the Mid-Columbia Chapter of MDAA was one of the best chapters in the U.S.

Dorothy recalls conversations with people as she went on those house-to-house March Campaigns. Some told her she was crazy for doing what she did. She always responded with a smile and said, “I will walk miles and miles in the cold and snow to help those in wheelchairs who can’t walk at all.”

You see, Dorothy was inspired to support MDA because, by 1957, she had lost an uncle and brother to complications caused by Duchenne muscular dystrophy (DMD), and had a child with the disease. In 1967, Dorothy’s son, Thomas, also passed away from complications of DMD, at the age of 24.

Dorothy has accomplished much in her life besides helping MDA. In 1947, she was instrumental in getting special education classes established in the public school system in the state of Washington. In 1956, the state named her “Woman of the Year” for outstanding community service. She worked as a volunteer in the Nixon White House from 1970 to 1975, and in 1984, served as a Reagan delegate to the Republican National Convention. She remained active in Republican politics after moving to North Carolina in 1985, and was inducted into the North Carolina Republican Hall of Fame in 1999.

To this day, Dorothy still is doing her part to support MDA. Through materials provided by MDA, she learned about estate planning, created an estate plan, and recently informed MDA that she has remembered the Association in those plans by giving a large percentage of her estate to MDA upon her passing.

Today, 89 years into her wonderful life of helping others, Dorothy is still leading by example. Her lifetime of action and support for MDA has meant a lot to the Association’s fight against muscle-wasting diseases.

With people like Dorothy in our corner, we cannot fail! Please follow her lead – provide help and hope for those who need it. Make a gift to MDA through your estate plan. Thank you, Dorothy!

DS Dorothy Quinn Bursey
tax free

Anna Koval Korop

Anna Koval knew exactly what she wanted out of life. Born in 1917 and raised in a closely-knit family in North Dakota during the Great Depression,…

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Anna Koval knew exactly what she wanted out of life. Born in 1917 and raised in a closely-knit family in North Dakota during the Great Depression, she dreamed of having a family of her own. She married Jack Korop and they relocated to Oregon to pursue his career. They were thrilled when their first child, a girl they named Edris, was born in 1948.

In 1952, at the age of 4, Edris was diagnosed with Limb-Girdle muscular dystrophy, a group of disorders affecting voluntary muscles mainly around the hips and shoulders. Determined to ensure the best quality of life for her daughter, Anna researched what services and medical equipment were available and obtained a power wheelchair, hospital bed with floating mattress and Hoyer lift. Edris attended the public school system and her family was proud when she graduated from high school.

Warmhearted and generous in nature, Anna devoted herself to her daughter’s care in their home. After Jack passed away in 1978, Anna reached out to the local MDA Chapter in Eugene, Oregon. MDA had already provided informational assistance and medical equipment, but now Anna was hoping for more—and she was relieved to find it available in abundance. Local MDA staff involved Edris and her mother in a support group, home visits, phone calls and cards of encouragement, transportation to appointments and routine servicing of Edris’ equipment.

After Edris passed away in 2001, Anna stayed in touch with her friends at MDA. She wrote her will to include MDA as sole residuary beneficiary. Following her death in 2012 at age 95, Anna’s longtime attorney, Tom Wurtz, confirmed Anna’s sincere respect and gratitude for MDA: “Anna greatly appreciated the work [MDA is] doing and the benefits available through your organization.”

Anna’s legacy is just one example of how gifts to MDA through estate plans help impact the future for kids and adults living with neuromuscular diseases like Limb-Girdle muscular dystrophy. By including MDA in their plans, many donors like Anna continue to touch countless lives.

Join a Giving Society

Together we can do so much. Join a community of people who share your passion for empowering people living with neuromuscular diseases by becoming a member of one of our giving societies.