Friday, February 05, 2010

A Super Sunday HD story

On Super Sunday some 100 million Americans will watch some of the greatest athletes on the planet compete for the championship of the National Football League (NFL). Collectively these young men will earn hundreds of millions of dollars over the span of careers that probably won’t last beyond the age of 35. The winners of the Super Bowl will gain status as virtual demigods in a country where the Sunday ritual of watching football has taken over as the national religion, a religion where people profess a belief in sports as the path to success in life.

Like most American boys, I imagined myself as a sports hero. In high school and college I worked as a professional sportswriter. But over time I discovered many other pursuits, and I no longer had time or interest in following professional sports.

The strange twists of life, however, led me once again to follow professional football in a way far more meaningful than I could ever have imagined.

Football and HD

This story began in 1995 when I received the shocking news that my mother had Huntington’s disease. I became a board member of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA) in 1998. The next year I tested positive for HD.

At around this time a brave lady named Ramona Johnston also tested positive. Ramona is the wife of Bill Johnston, the public relations director for the NFL’s San Diego Chargers franchise. Like me, Bill has dedicated his life to helping find a cure for HD.

Bill joined the board in 2000 and immediately established himself as the chief fundraising organizer. From 2004 to 2008 he served as president. He has parlayed his connections in the San Diego community and the football world into well over a million dollars in donations for Huntington’s research, including generous support from Chargers President Dean Spanos and his wife Susie and Chargers owner Alex Spanos.

As a fellow board member and editor of our chapter newsletter and website, over the past decade I have worked with Bill on countless occasions. Covering the chapter’s activities led me to resurrect my sportswriting skills as I produced article after article on the Chargers’ involvement with HDSA-San Diego.

At our events I’ve shared a bit of my family’s story with people like Marty Schottenheimer, who donated thousands of dollars to our cause while working as the Chargers’ head coach from 2002 to 2006.

In 2006 I interviewed star running back and kick returner Darren Sproles. Four members of Sproles’ extended family suffer from Huntington’s. The following fall Bill took me into the locker room to interview some of the Chargers offensive linemen, who have regularly attended HDSA-San Diego events and co-sponsored the chapter’s “TDs to Cure HD” program.

Rooting to escape

I became a Chargers fan. I shout and scream so loud after every touchdown that I scare my wife and daughter. Every victory puts a glow on the coming week, and every loss depresses me for a couple of days.

I cheer for the Chargers, but also for Bill, Ramona, myself, and the entire Huntington’s disease community. Chargers successes raise our hopes for increased fundraising and awareness.

Rooting for the Chargers on Sundays and following their news in the paper during the week also help me escape for a while from the dreadful likelihood of ending up like my mother, who lost the ability to walk, talk, and eat. She died of HD in 2006.

Comparing symptoms

Ramona is about my age. Watching her struggle with the initial symptoms of HD and then decline over the years has deeply saddened and distressed me as I worry about my own gene-positive status.

Naturally, I have compared myself to her and others in my age group who are gene-positive or at risk of being positive. And, naturally, I’m reassured that I’m still okay.

This brings up powerful emotions.

Bill’s hectic professional life and work in spearheading HD fundraising put many demands on his time. Occasionally the two of us will sit in his office and talk about our respective situations.

He makes a point of asking how I’m doing. I’m always deeply relieved to say, “I’m hanging in there: no apparent symptoms yet.”

But I also feel guilty, because Ramona now lives in a public care facility and can no longer take care of herself.

But I know that Bill is rooting for me and everybody else – including his untested young adult daughter – to beat this disease.

The Super Bowl of HD research

On Super Sunday I will wish both sides well, but especially Drew Brees, the quarterback of the New Orleans Saints. Brees attended several HDSA-San Diego events during his time on the Chargers, from 2001 to 2005. Brees has showed solid leadership in the New Orleans community in the wake of hurricane Katrina, and a Super Bowl victory would provide a lift in rebuilding the city’s infrastructure and spirit.

But I won’t have much time for the game. I’ll be making the final preparations for a long drive to Palm Springs to watch what might be called the Super Bowl of Huntington’s disease research.

I’ll be attending the Fifth Annual CHDI Therapeutics Conference and also the CHDI Clinical Workshop, scheduled from February 8-11. The CHDI Foundation, Inc., is the largest private sponsor of Huntington’s disease research in the world. Backed by an anonymous donor, in 2008 alone it spent some $80 million in the search for treatments and a cure.

While Brees, Peyton Manning, and the household names of professional football play out their X’s and O’s on the field, some of the world’s top HD researchers will be preparing to hone in on the latest data about mHTT (the mutant huntingtin gene), RNAi (RNA interference), and a slew of other discoveries and technologies entering into the playbook for stopping HD.

The HD stars will include scientists from CHDI, the University of Massachusetts Medical School, the University of California at Los Angeles, Columbia University, Johns Hopkins University, the Swiss Federal Institute of Technology, the University of Cambridge (England), Friedrich-Alexander University (Germany), Monash University (Australia), and a host of biotechnological and pharmaceutical companies.

I hope to interview, photograph, and videotape some of the scientists to help chronicle the historic fight to stop Huntington’s.

Intense feelings

As a person who is gene-positive for HD, I deeply identify with these scientists and their quest to rid humanity of HD and other horrible neurological conditions.

And as they warm up for the conference and workshop, I will ponder my own identity within the HD community. I plan to carry my HDSA-San Diego business cards. Undoubtedly people will ask me about my involvement with HDSA and my specific role at the conference. I will take yet another big step in coming out about my status.

In recent days I’ve thought once again about the dual nature of my existence – going back and forth between my professional life and my HDSA activism, between my professional writing and this blog.

I am struggling mightily to integrate these two facets of my life. To do so, I believe that I need to become more public about my status. At the same time, the very process of going public requires that I no longer live these two facets as separate.

Football stars and others in our celebrity-struck culture have thrived on fame. Ever since HD came into my life, I have had the opposite reaction: to keep an absolute firewall between my HD activism and the rest of my life.

A lot is riding on the CHDI conference for me and the HD community in general.

I think my Super Sunday ride will be every bit as intense as the game is for the football players.


Kim Taormina said...

I hope you have a safe journey to the conference and look forward to your followup. God Bless.

Anonymous said...

"Going public" will require courage, but I predict that one result will be that, in this fight against HD, you will not just feel more powerful, but be more powerful. Your activism inspires me. Thanks for all you are doing.

Pam Westman said...

Goooooooo TEAM!
You are an inspiration.
At one time I was more of an activist. Now I find I am slowing down a bit. Keep up the outstanding work. (Living with HD)

Anonymous said...

Gene, your insight, dedication, and fight are awe inspiring. Go get a great report in Florida. We, the HD community, could not have a more enthusiastic champion for our cause. Keep sharing and a million thanks. Lucia

Rob Millum said...

Once again your courage is showing. To even have this dicussion in public shows alot. I am sure you have struggled with this decision for awhile now both privately and with your family. As aways we the HD community are here to assist and support you whatever you decide.

Anonymous said...

Thanks, so much. Your work gives us hope.

donna said...

Two years ago I met a lovely man and we struck up a friendship. Shortly after he let me know that he has HD. I was crushed then and still am. Although he doesn't really keep in touch, his life and his story has impacted mine. I am grateful that he told me because I didn't know anything about HD, and now I give to research, pray for him and his family, etc. It is important to "go public" so that awareness will increase. I hope this generation will see the cure. God bless you...keep up your courage and your work. I am with you and the HD community and am determined to do all that I can to help.