Comedian Rod Man’s heartfelt speech, Ramona Johnston’s death remind us of urgent need to cure Huntington’s disease

In his raw, heartfelt speech in February about the devastation of Huntington’s disease in his extended family, comedian Rod “Rod Man” Thompson reminded his audience of the HD community’s urgent need for help: “We’ve got to find a cure. Any disease: you want to kick his ass.”

On April 4, the story of yet another fallen “HD warrior” drove home how the condition often strikes in the prime of life and is ultimately fatal. That night, Ramona Johnston, the wife of longtime San Diego Chargers football team public relations director and major HD fundraiser Bill Johnston, succumbed to the disease after more than 20 years of brave struggle. Diagnosed at age 39, Ramona was just 60.

“Ramona passed away last night after fighting unbelievably hard against this horrible disease,” Bill wrote on Facebook on April 5. “As much as I knew this day would come, it hurts so bad that my girl is gone. She’s the strongest, toughest, bravest person I know. One of God’s angels on earth finally has peace and is with Him in heaven.”

Introducing Rod Man

HD affects not just individuals but families. To illustrate that, as promised earlier, I’m now providing a detailed report on Rob’s important and moving February 25 keynote address to several hundred scientists, drug hunters, and advocates at the 14th Annual Huntington’s Disease Therapeutics Conference. Sponsored by CHDI Foundation, Inc., the event took place at the Parker Palm Springs hotel in Palm Springs, CA. 

A standup comedian, Rod Man was the winner of season 8 (2014) of NBC’s Last Comic Standing reality TV talent competition. He has appeared at Caesar’s Palace in Las Vegas, the Apollo Theater in New York City, and the Gibson Amphitheatre in Los Angeles, where he resides. He has also appeared in film and TV roles, and hosts his own YouTube shows.

“That’s my passion,” said the performer known as Rod Man. “Tonight, we’re going to set a different tone. I am Rod Thompson tonight.”

A native of the small Georgia town of Villa Rica, Rod was the first African-American CHDI keynoter. His family’s story underscored the fact that HD affects people of all ethnicities, as well as both sexes.

“As an African-American, I know that sometimes we don’t get the information,” Rob commented. “I’m here as a black man.”

However, he said, he recognized that HD affects his family just as it does others. He said that he aimed to “promote conversation” and awareness about HD, no matter what a person’s personal or educational background.

Rod "Rod Man" Thompson (right) exchanges laughs with leading HD researcher Steven Hersch, M.D., Ph.D., of Voyager Therapeutics, after Rod's keynote speech (photo by Gene Veritas).

The challenges families face

Rod titled his presentation “The Cycle: My Mother’s Story.” Interlacing humor with wrenching stories of HD’s debilitating physical and mental impact on his 66-year-old mother Shirley, Rod captured the many aspects of HD that families struggle with and doctors and scientists seek to alleviate.

His speech reflected once again how, as an inheritable disease, HD affects the extended family. His elder daughter prepared the slides for his talk. It included photos of Shirley and three aunts – all now in nursing homes – and a cousin also stricken with the disease.

Rob recalled how his maternal grandmother was initially misdiagnosed with cerebral palsy. Growing up, he was unaware of HD. “I just knew my grandmama was mean,” he said, referring to HD’s psychiatric and behavioral symptoms.

Before arriving in Palm Springs, Rod interviewed his sister, the primary caregiver for his mother in Villa Rica. She described details of Shirley’s daily struggles with HD, as well as the constraints it imposes on her own life.

“I understand how it affects her life,” Rod said. “She said, ‘Yes, it’s a lot to deal with.’”

Because of her “sacrifice” to care for Shirley, Rob’s sister has for now given up her own career dreams in fashion design, Rob added. “I could see the anger build in her, because she feels like, ‘If I don’t, who else is going to?’”

Rod recognized that other HD families face a similar battle. “It’s like having a child sometimes,” he said of the inability of HD people to care for themselves and the challenges faced by caregivers.

Shirley’s decline

Shirley showed symptoms before her official diagnosis in 2016, Rob explained. 

“Once they told her, she broke down and cried, because she knows from her sisters and her mama what it does,” he said.

Rod described the terrible physical, cognitive, and psychiatric decline that HD has wrought in his mother.

“I see depression and sadness about stuff that can be a misunderstanding to most people, and they’ll let it go, but she still holds on to it and harbors it,” Rod said.

Because of Shirley’s involuntary movements, the family also keeps kitchen utensils away from her to prevent her from injuring herself or others. She can no longer walk normally.

“Now it’s better for her to eat with her hands, because she’s a little shaky,” Rod explained. “Her body’s not the same.”

Inspiring the scientists

Untested, Rod and his two daughters – a college graduate and a high school student – are also at risk.

Rod and members of his extended have candid conversations about testing. However, he added, “Most people in my family are scared to get tested.” That reflects the majority attitude in the HD community. 

However, Rob hopes for a cure, hence his motivation to keynote the conference. “I appreciate what you guys do in your work day to day,” he said. “You all do admirable work. Hopefully, by telling my story, and others like me, you’ll get inspired.”

Rod received a standing ovation.

You can watch Rod’s address in the video below.

Celebrating Ramona’s life

Ramona died at Edgemoor Hospital in Santee, CA. The highly regarded public long-term care facility has cared for dozens of HD patients over the last few decades.

In early 2017, when the Chargers announced their move to Los Angeles, Bill made a gutsy, loving decision: after 38 years with the team, he quit so that Ramona could stay at Edgemoor. He visited her there each morning before heading to work.

“Everybody would make the same decision I am making if they were in my shoes,” Bill said at the time. “It’s just the situation I find myself in.” (Click here to read more.)

Bill now works for the San Diego Padres baseball team, which has supported his advocacy.

Ramona’s son Jared tested negative for HD. Untested, daughter Hayley is the vice president of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA). She and Bill continue as leading advocates in Southern California. Their efforts have raised almost $3 million for HDSA.

A Celebration of Life will take place at 1 p.m., April 17 at Skyline Church, 11330 Campo Road, La Mesa, CA. In lieu of flowers, memorial contributions may be made to HDSA or www.HelpCureHD.org.

The Johnston team at the 2014 Rock-n-Roll Marathon raising funds and awareness for HDSA. Bill has his arm around Ramona, in wheelchair. Daughter Hayley stands directly behind Bill (photo by Andrew McClanahan/PhotoRun.net).

Staying when the Chargers leave: a leading Huntington’s disease advocate sets a gutsy, loving example

After the San Diego Chargers’ recently announced move to Los Angeles, team public relations director and Huntington’s disease advocate Bill Johnston made a gutsy, loving decision: after 38 years with the Chargers, he will quit so that his HD-afflicted wife Ramona can stay at the highly-regarded San Diego nursing home where’s she spent the last decade.

Bill made his decision after thoroughly researching nursing homes in Orange County, which is much closer to the Chargers’ new Los Angeles headquarters than San Diego County. He visited seven facilities, paying special attention to their ability to conscientiously care for someone with HD. As the HD community is all too painfully aware, such facilities often provide poor care.

Bill did not find what he wanted. He opted for Ramona to remain at Edgemoor Hospital in Santee, located next to San Diego. A public nursing home, Edgemoor has cared for dozens of Huntington’s patients over the past several decades.

“Everybody would make the same decision I am making if they were in my shoes,” Bill told the San Diego Union-Tribune. “It’s just the situation I find myself in.”

Bill awakes at 4:55 a.m. daily and visits Ramona at Edgemoor before heading to work. She was diagnosed with HD in 1999 but had showed symptoms earlier. She is now in the late stages of the disease, confined to a wheelchair and unable to care for herself. The native San Diego couple met in high school and married in 1983.

“She can’t talk anymore, but she’ll make some sounds,” Bill told the Union-Tribune. “Sometimes, I think she’s trying to say my name. Maybe it’s just wishful thinking.”

The Johnston team at the 2014 Rock-n-Roll Marathon raising funds and awareness for the Huntington's Disease Society of America. Bill has his arm around Ramona, in wheelchair. Daughter Hayley stands directly behind Bill (photo by Andrew McClanahan/PhotoRun.net)

‘I’ll always do what I can’

By interrupting his career and staying in San Diego, Bill is rolling with one of the many punches thrown by HD. His son Jared, 31, tested negative for HD. Daughter Hayley, 28, remains untested; she has a 50-50 chance of having inherited the HD genetic defect from Ramona.

Other HD families have adapted their lives dramatically to meet similar challenges. In my family, my mother died of HD, and I carry the gene. Since my mother’s diagnosis in 1995, HD has frequently dominated my family’s life. Fortunately, our daughter tested negative and is today a healthy teenager.

Bill’s situation reminded me of my own. In 2007, in a wrenching, career-changing decision, I turned down a major job offer in Miami to remain in California, a biotech state with crucial public support for stem cell research. California also has HD-involved companies such as Ionis Pharmaceuticals, Inc., which is currently running a historic Phase I clinical trial of a gene-silencing drug. Most important, remaining in California allowed my wife to keep her relatively well-paying teaching job and pension, our financial lifeline if I become disabled.

I had also bonded with Bill and many other members of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA-San Diego). Through chapter events, Bill and his family have raised nearly $3 million for HDSA. Their leadership and fortitude have inspired people in the local HD community and beyond.

In response to my e-mail query about his plans for future advocacy, Bill wrote: “I’ll always do what I can.”

“Bill has been a ‘tour de force’ in advocating for the HD community in San Diego and nationally,” HDSA-San Diego president Beth Hoffman, Ph.D., wrote in an e-mail. “Bill has tremendous energy and passion, and brings wonderful and new ideas to our fundraising efforts. He’s always been there to drive the chapter’s success. We are thrilled that Bill will remain in San Diego and look forward to expanding our efforts towards the HDSA mission with him.”

“I am not surprised by Bill's decision to stay,” long-time HDSA-San Diego board member Misty Daniel wrote. “His dedication to Ramona and our HD community has never faltered over the years. Bill's decision to stay reaffirms what most HD families know: that family truly is everything.”

Ramona with Chargers star and HDSA supporter Antonio Gates at the 2007 Celebration of Hope Gala (photo by Gene Veritas)

Change means new opportunities

After 56 seasons in San Diego, the Chargers’ departure angered local football fans and civic leaders. “The Los Angeles Judases have betrayed us for 30 pieces of silver,” wrote Union-Tribune sports columnist Nick Canepa, who is also a member of HDSA-San Diego’s advisory board, in reference to the move

The team’s’ exit has also posed a huge challenge for HDSA. Bill’s involvement since 1999 added the team’s high-profile pro-football brand to most major fundraising events, including the chapter's annual gala. For years, HDSA-San Diego board meetings took place at Chargers’ headquarters, and team owner Dean Spanos allowed use of that facility for fundraisers. In 2003, Spanos and his wife Susie received HDSA’s Harold Leventhal Community Service Award at a dinner in New York City.

However, Bill’s decision to remain has helped offset the feelings of desertion resulting from the Chargers’ move. His connections, creativity, and dedication will help the chapter strike out in new directions. As Bill has always made clear, he’s also in this fight for Hayley – and for all families affected by HD.

Bill and Hayley Johnston exchange ideas at an HDSA-San Diego event in May 2016 (photo by Gene Veritas).

Over the years, other chapter members and even Bill himself recognized the danger of relying too heavily on the Chargers. As a result, the chapter has strived to diversify its sponsor and donor base.

The Chargers’ exodus might also provide unforeseen benefits such as distancing HDSA-San Diego from the uncomfortable connection to a sport now linked to brain diseases similar to HD.

“The Chargers organization has been stellar in its support,” Dr. Hoffman wrote, noting the chapter’s gratitude for the players’ “enthusiastic participation” at fundraisers. “We will miss our Chargers.

“That said, the HDSA-San Diego board and all of our wonderful volunteers are hard at work attracting sponsors and making our events even more exciting. Whenever there are changes, there are new opportunities. Our job is to find and leverage these opportunities to their maximum potential.”