Former National Goodwill Ambassador receives MDA's top award

by Amy Labbe

Mike Neufeldt on the job at Harley-Davidson company headquarters in Milwaukee.

As a 6-year-old in the first grade, Mike Neufeldt used an orange “PONY” scooter to keep up with classmates on the playground and in gym class. After attending an MDA Harley-Davidson event, where one of the drivers gave him some decals, Neufeldt proudly plastered the company’s bar and shield on the back of his ride, and when kids inevitably asked if Harley-Davidson had made his scooter, Neufeldt told them “yes.”

Some might say it was prophetic, or perhaps written in the stars, but more than 20 years later, the New Berlin, Wis., resident works for the famed motorcycle manufacturer as a communications specialist at company headquarters in Milwaukee; there he assists in the setup and training for various dealer Web sites.

There’s another event in Neufeldt’s life, though, that also seems as if it always was meant to be. This year, Neufeldt, who has Emery-Dreifuss muscular dystrophy, was selected as MDA’s 2008 Robert Ross National Personal Achievement Award recipient.

The award, announced during the national broadcast of the 2007 Jerry Lewis Labor Day Telethon recognizing the accomplishments and community service of people with any of the neuromuscular diseases MDA covers.

This year the award was renamed in honor of Robert Ross, MDA’s longtime chief executive, who died in June 2006.

Neufeldt, who turns 30 Dec. 17, is the first PAA recipient who also was an MDA National Goodwill Ambassador as a child and, as it happens, his selection coincides with the 20th anniversary of his first term in the national ambassador role.

In the beginning

Mike, with his parents, Ray and Carol Neufeldt

As Southeast Wisconsin Goodwill Ambassador in 1985 at age 7, and again in 1986, Neufeldt enjoyed making appearances on his local Telethon broadcast with co-hosts WITI-TV news director Jill Geisler and consumer affairs reporter Tom Hooper. He remembers telling Geisler on his first appearance how much he liked her dress, and explaining in great detail about his treatments.

At age 8, Neufeldt was named MDA National Goodwill Ambassador, serving in 1987 and again in 1988, a time he describes as “the best two years of my life.”

“It was such an honor to represent MDA at events all over the USA,” he explains. “I did look at it as an important job — one I had fun doing, but also one that had great responsibility. I wanted to teach people about abilities, not disabilities.”

In addition to speaking at various events and fund-raisers, Neufeldt filmed several public service announcements for MDA, including one for McDonald’s called “Large Fries for Small Fries,” with basketball great Michael Jordan, and another for Aisles of Smiles with MDA National Chairman Jerry Lewis.

“I always knew Jerry would take good care of me,” Neufeldt says. “He always made me look good on camera and at events.”

Neufeldt accompanied Lewis to the White House to visit then President Ronald Reagan.

“Jerry was goofing around with me and trying to keep me loose,” Neufeldt says of the time they spent waiting to see the president. “The next minute Jerry would be telling a story of all the former presidents he had entertained. I remember thinking that Jerry Lewis is part of our country’s history also.”

Part of the team

In addition to cheering on Team MDA, Neufeldt always has been a sports fan, following professional baseball, football, basketball and college basketball. He roots for all the home teams, including the Brewers, Packers, Bucks and Marquette University (his alma mater) basketball. Although he never played sports, in high school Neufeldt was scorekeeper and statistician for his high school’s varsity basketball and baseball teams.

“Scorekeeping gave me the opportunity to be part of the team,” he says. “I got to experience the highs and lows, wins and losses.”

In 1997, Eisenhower High School honored Neufeldt by naming its new baseball field Mike Neufeldt Field. He was honored again this May after new dugouts and a press box were added, and the field was rededicated with a ceremony, followed by an alumni game.

In 2005, Neufeldt seized the opportunity to combine his love of sports with his talent as a communicator and writer, co-authoring a book with friend and Milwaukee TV sports reporter Tom Pipines. Tales from the Marquette Hardwood (Sports Publishing) traces the memorable moments, on and off the court, in the long and storied tradition of Marquette University men’s basketball, including the team’s fight to the 1977 NCAA championship.

Neufeldt says although it was a “tremendous undertaking,” he’s happy to have had the experience.

“We were a good team,” Neufeldt says, noting he was honored to work with Pipines. “Tom had the experience and contacts, and I had the computer and writing skills.”

The importance of volunteering

In 1996, Neufeldt attended Marquette University in Milwaukee as a Burke Scholar; the award provided full tuition and board, and was based on scholarship, leadership and community service. To maintain the scholarship, Neufeldt says, he had to keep a 3.5 cumulative grade point average and perform 450 hours of community service each year.

Neufeldt tutored elementary school students during the school year and in summer school. He also volunteered at the University’s Community Action Program, finding volunteer opportunities for sororities, fraternities or other large groups of students.

“Volunteering is a great way to give back to the community,” Neufeldt says. “We all have talents and other skills that we can share with others. I feel that I am helping others and doing my part to educate and teach people about living with a disability.”

Volunteering, take 2

Since graduating from Marquette in May 2000, Neufeldt has worked with Children’s Hospital of Wisconsin on an advisory committee giving input on the construction of a new hospital. He’s also been a speaker for Children’s Hospital about transition from high school to college, and in 2005 worked with Young Professional Milwaukee on Disability Awareness Day, during which numerous high-profile individuals spent the day in wheelchairs experiencing the day-to-day obstacles wheelchair users face.

Neufeldt continues giving in other areas as well.

“Volunteering for MDA did not end with my goodwill ambassador days,” he says.

He and his family volunteer at local MDA events and the local Telethon broadcast. Since 1998 he’s served as co-host on the Southeastern Wisconsin MDA Telethon broadcast on WDJT CBS-58 in Milwaukee. He’s also been a member of the MDA National Task Force on Public Awareness since 1997.

In 2006, Marquette University named Neufeldt recipient of the prestigious James T. Tiedge Memorial Award, given to former students of broadcast and electronic communication for professional excellence consistent with the values of ethical behavior and social responsibility.

Reflections on Robert Ross

Mike - then known as Mikey - back in 1987 as MDA's National Goodwill Ambassador and, 20 years later, as the latest recipient of MDA's National Personal Achievement Award.

An important influence in Neufeldt’s life was his friend Robert Ross, to whom he became close while serving as National Goodwill Ambassador. This connection makes Neufeldt’s selection as the first recipient of the newly renamed Robert Ross National Personal Achievement Award even more special to him.

“Bob Ross was one of the kindest men I have ever met,” Neufeldt says, explaining that one of the things he remembers most was the phone calls Ross made to him and his family.

“He would always call just to say ‘hi’ and see how we were doing,” Neufeldt says, adding that the calls didn’t stop after his two terms as national ambassador concluded. “The phone calls continued and always told me that Bob, my friend, cared about how I was doing. I miss Bob’s phone calls.”

Neufeldt remembers making many trips with his family to visit Ross in Tucson, Ariz., where he enjoyed watching Ross play with his dog, Tallulah, and testing his vocabulary in endless rounds of a word game Ross loved called GHOST.

“I miss Bob very much,” Neufeldt says, adding, “I think about the great legacy he left MDA.

“It’s a great honor to receive the Robert Ross MDA Personal Achievement Award. When I think about personal achievement and lifetime achievement, it’s Bob who I think about.”

Looking ahead

As recipient of the national achievement award, Neufeldt looks forward to continuing his enduring friendship with MDA, serving as leader, role model and teacher to those with disabilities and without.

“I never wanted to be a teacher, but in many ways I have been teaching people about disabilities my whole life,” Neufeldt says. “MDA has given me the exposure and platform to speak and be someone who is recognized as a leader.

“I feel honored and humbled that people think of me as an inspiration. I just try to live my life the best way I know how.”

Six Familiar Faces
Catching up with past MDA National Personal Achievement Award recipients
by Amy Labbe


Michael Wasser, 2005
33, Becker muscular dystrophy
An attorney with the New York City Corporation Counsel’s Office, Wasser works on matters he finds meaningful and interesting. This includes consulting on real estate transactions that benefit cultural and other institutions, and representing the city in the acquisition of property for building public schools, parks and affordable housing.

“This is in addition to my other job,” he jokes. “The one all-too-familiar to those of us living with muscular dystrophy — the job where I must wake up, wash up and win a pitched battle with my pants.”

Since receiving the PAA, Wasser has co-authored a chapter for the New York State Bar Association’s book on condemnation law. He’s met Mayor Michael Bloomberg and attended receptions commemorating the passage of the Americans with Disabilities Act at Gracie Mansion (the official residence of the mayor of the city of New York).

For Wasser, winning the MDA National Personal Achievement Award was a “treasured honor,” one of many steps in his efforts to improve access for people with disabilites.

“It is my ability to interact with judges, colleagues, adversaries and other New Yorkers as a peer, who just happens to have a disability, where I believe the most effective progress toward transcending disability is made,” he says. “These nonpublicized, everyday opportunities go further than any award or article ever could.”

Nicholas Johnson, 2004,
44, Friedreich's ataxia
A registered professional engineer and certified energy manager, Johnson works as an associate and senior mechanical engineer at Bard, Rao + Athanas Consulting Engineers at company headquarters in Watertown, Mass.

One of Johnson’s newest passions is working as a liaison, facilitating communication between MDA and the Friedreich’s Ataxia Research Alliance (FARA), where he’s on the board of directors and the executive committee. Johnson also serves as a member of MDA’s National Task Force on Public Awareness.

On winning the PAA, Johnson says, “It benefited me — put me in the spotlight and helped raise funds. With people that knew me and people who didn’t, it raised a great deal of excitement.”

Amy Dunaway-Haney, 2003
38, limb-girdle muscular dystrophy
Currently on a sabbatical leave from teaching at Kettering Fairmont High School in Dayton, Ohio, Dunaway-Haney, along with her husband, Tim, is building a house in South Padre Island, Texas. While on leave, she plans to volunteer at orphanages, schools, clinics and communities on the Texas-Mexico border, and will be doing an independent study through the University of Dayton of Mexican culture and the Spanish language.

Dunaway-Haney won the Wal-Mart Teacher of the Year Award in 2005, and the Disney Teacher of the Year Award in 2006. She has given presentations to teachers from other schools and at educational conferences, and has published, with colleague Katie Oliver, more than 20 educational books and games for teachers and students.

“Winning the MDA Personal Achievement Award was a huge honor,” Dunaway-Haney says. “The sense of pride that came from representing all of the hardworking, accomplished people who have MD was tremendous.

“Everyone who has a neuromuscular disease or has a loved one with the disease, knows the challenges that we all face every day,” she adds. “Therefore, to be recognized as the Personal Achievement Award winner for MDA from all of the deserving people across the country who overcome obstacles every day, gives me the desire to continue to do my best and to never give up!”

Jan Blaustone, 2001
52, limb-girdle muscular dystrophy
Blaustone spends most of her time with her husband Michael, son Lee, dogs and service dog in Nashville, Tenn., where she recently has become involved in fostering dogs for a friend’s non-profit, no-kill animal shelter, Proverbs 12:10 Animal Shelter (www.proverbs1210.petfinder.com). She also volunteers as a speaker for the nonprofit Canine Assistants in Alpharetta, Ga.

Blaustone, a frequent contributor to Quest since 1994, has four paintings in the MDA Art Collection, including one honoring fire fighters after the Sept. 11 attacks. (Blaustone was a fire fighter prior to the onset of LGMD in 1987). She was a longtime host, with Marybeth Waltman (MDA’s 1999 PAA winner), of an MDA chat about service dogs, and currently serves on MDA’s National Task Force on Public Awareness where she’s a member of the steering committee.

Receiving the National Achievement Award meant many things to Blaustone, who says, “Part of me felt like Sally Field, saying, ‘You like me! You really, really like me!’ The other part felt like my family was patting me on the back for taking the cards that were dealt me and playing a decent hand.”

Blaustone says the most important aspect to winning was “being in the public eye as a woman who continues to grow, adapt and thrive while facing the challenges that progressive neuromuscular disease presents. It’s important,” she adds, “for all people, young people especially, disabled or otherwise, to follow their dreams, and if MDA’s presentations of these awards help individuals become inspired, then it’s all good and I’m proud to have been a part of it.”

Marybeth Waltman, 1999
47, spinal muscular atrophy
Waltman has worked for the Social Security Administration in Hartford, Conn., for nearly 25 years. A claims representative, she provides information and direction to help people obtain benefits from the agency.

Waltman and her husband, Jim, recently embarked on a mission to satisfy their passion for rescuing and training dogs. In 2002, the two founded Assistance Dogs Unlimited, (www.assistancedogsunlimited.org), a nonprofit agency that rescues dogs and trains them to provide service to people with mobility impairments.

“I was very flattered to receive the award,” Waltman says of her selection as the PAA recipient for 1999. “What I do every day — I don’t expect to be recognized. I consider myself a very normal person, so it was nice to be honored.”

Steve Mikita, 1992
51, spinal muscular atrophy
Mikita, the first-ever recipient of the National Personal Achievement Award, is working his 25th year as an assistant attorney general for the state of Utah in Salt Lake City.

Since his selection for the award, Mikita has written his second book, The Passionate Advocate, a guide for parents of children with physical disabilities. He’s made guest appearances on “60 Minutes” and “The Sally Jessy Raphael Show,” and served as a guest commentator on MSNBC.

“The national award gave me a platform,” Mikita says, “from which to speak out on issues impacting not only those of us with neuromuscular diseases, but all Americans with disabilities.

“I’ve received a lot of awards, but none has approached the value and impact that this award has had in my life.”