Tuesday, February 28, 2017
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.”
Friday, February 03, 2017
As more than 100 million people get ready to watch the Super Bowl on February 5, I’d like to point to the increasing number of people who express deep concern over concussions and disabling brain injuries caused by tackle football.
Advocates for Huntington’s disease and other devastating neurological conditions share such concerns. I witnessed my mother’s ultimately fatal fight against HD, a brain disorder that manifests many of the symptoms experienced by football players who have sustained head injuries, including memory loss, aggressiveness, and suicidal tendencies.
Because I inherited the HD gene, I face the same fate.
I do not wish HD or anything like it on anybody.
I used to like watching football, especially because the San Diego Chargers supported the HD cause. But after the revelations about head injuries, I stopped watching because doing so contradicted my commitment to brain health. I will not tune in on Super Sunday.
Along with a growing number of scientists, brain health advocates, and athletes and their families, I’m disturbed by the traumatic effects of these injuries. This situation impacts not just the players, but their families, who must care for their loved ones as they watch them struggle with and even die from brain trauma.
As an HD advocate and college professor, I have become increasingly distressed that so many colleges and universities – including my employer, the University of San Diego (USD) – still prioritize the entertainment and community-building value of football over the clear risks to student athletes.
If institutions of higher education truly embody academic integrity and guard their students’ well-being, how can they allow football to continue? Are university administrators in denial about brain injuries, as were the executives of the National Football League (NFL)? How can they possibly allow students to take such a risk?
Highly paid NFL professionals now know what they face. In an admission some say echoes Big Tobacco’s recognition that smoking causes cancer and heart disease, in March 2016 the NFL finally acknowledged the link between football and CTE (chronic traumatic encephalopathy), a disabling brain disease first seen in boxers in the mid-twentieth century. Last December, the conclusion of the historic concussion lawsuit against the NFL paved the way to potentially distribute up to $1 billion to as many as 20,000-plus (!) former players.
College players are not professionals, although many coaches and athletic programs treat them as such, albeit without compensation. They are students. Colleges are not businesses. They are institutions of learning. They should not expose students to the possibility of CTE, Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease, and the other disorders caused by concussions and the numerous sub-concussive hits to the head that occur in a football game.
Since November 2013, I have advocated at USD for player safety in light of the revelations about concussions and brain trauma (click here to read more). Other faculty members are also troubled by the risk to student health.
With the mounting scientific evidence about the dangers of football, Professor Daniel Sheehan, Associate Professor Nadav Goldschmied, and I (Gene Veritas, aka Kenneth P. Serbin) have proposed a resolution for the February 7 meeting of the Academic Assembly of the College of Arts and Sciences strongly urging that “the USD football program be terminated immediately.”
We know some consider this premature, or would call us killjoys. But we can’t ignore such a serious threat to student health.
“Knowingly putting our athletes at such risk is not consonant with the mission of the University,” the proposed measure states. “Putting athletes at unnecessary risk puts the University in significant legal and financial jeopardy.”
Last November 17, Prof. Goldschmied advocated for the resolution at an informal College of Arts and Sciences gathering where professors made brief presentations of their research and other activities. Referring to USD’s promotional campaign as a “changemaker” university, he titled his talk “Changemakers? Why USD Football Should be Banned.”
“We advertise ourselves as ‘changemakers,’” he stated. “The question is: are we going to follow, or are we going to lead in what we do with our football program?” He received enthusiastic applause.
Prof. Goldschmied said that he had met with USD President James T. Harris III, D.Ed. to recommend the football ban. Dr. Harris declined to institute a ban, stating that the university would reevaluate as further data about football injuries becomes available.
“And I suggested, how about we do it the opposite way?” Prof. Goldschmied said. “Let’s cancel football and, if the data is promising, we will reinstate it.”
Dr. Harris reaffirmed his opposition to cancelling football at a December 8 USD Faculty Senate meeting. According to Senate minutes, he stated: “No universities have closed their football program in the last decade because of concussion evidence yet. It is a complicated issue. We have a successful and a good program. The answer is no but always open to more data and
Dr. Harris cited other factors for his refusal such as the team’s excellent graduation rate (higher than the university’s overall rate); football’s ability to attract male students (USD has a majority of women); and improvements in USD’s athletic program’s concussion protocols and concussion education. Of course, college presidents must also deal with pushback from alumni, boards of trustees, and fans.
You can watch Prof. Goldschmied’s presentation in the video below.
Like crashing a car into a wall
As pointed out by researchers, football’s unique danger lays in the fact that it includes subconcussive hits, which don’t rise to the level of a concussion but can compound trauma. While a player might not suffer an in-game concussion, which would get him off the field, he can sustain dozens of the smaller hits.
On January 9, the day Alabama and Clemson played in the college national championship, the New York Times posted a highly telling report illustrating what happens to a football player’s brain from both big and small hits. As a video in the report demonstrates, these hits affect the deepest recesses of the brain.
The article presented data on one lineman’s hits to the head – a total of 62 (!) – while blocking during a single game. The hits had an average force roughly the equivalent to the player crashing a car into a wall at 30 m.p.h. (Click here for the article.)
Given this kind of evidence, it is alarming that football remains a sport at any educational level.
Bo Jackson, the only man to be a baseball All-Star and football Pro Bowler, stated in an interview this month that he would not have played football had he known about the risks of CTE.
“We’re so much more educated on this CTE stuff, there’s no way I would ever allow my kids to play football today,” Jackson said.
A powerful message
As one USD faculty member observed, ending the school’s football program would send a powerful message to other educational institutions, perhaps helping prompt cancellation of college football across the country.
Instead of becoming a “Notre Dame of the West,” as some have suggested, USD, a Catholic institution, could uniquely project itself as a moral and intellectual leader.
Those of us in the Huntington’s, Alzheimer’s, Parkinson’s, and numerous other neurological disease communities know all too painfully the vulnerability of the brain, the immense caregiving cost to families and society, and the suffering of the afflicted.
By joining the cause to protect college students from brain trauma, we can reinforce overall support for brain health and neurological research and funding.