Dr. Nance during a visit to San Diego in 2007.

If you have ever seen, heard, or read about Huntington’s disease (HD) in the media, you have undoubtedly seen a portrayal of anguish, sadness, and suffering.

There is another side to HD, though, which needs to be told – a story of beauty, courage, engagement, and inspiration.

As a physician specializing in HD in Minnesota, I have been privileged to be a part of the stories I share below. I am sure that there are similar stories from other families facing other types of disease or trauma, and in other communities around the country.

But even if these stories are commonplace, they deserve to be told, as an antidote to the erosive acid of the stories that fill the internet, television, and newspapers on a daily basis. The names of children and my patients have been changed, to protect their privacy, except where the individuals are already known to the public.

I.

It is 1998. Ten-year old BJ has learned that his mother has HD, and he wants to do something to help.

But what can a ten-year old DO? BJ likes to play basketball, so with a little encouragement from Dad, he organizes a “Hoop-a-thon”, in which he and his buddies collect pledges and sink as many free throws as they can in five minutes.

They have fun, and so they do it again the next year. And the next year. And the next.

Twelve years later, this amazing early spring festival of health and youth and hope has raised over $500,000 for HD research.

Crunch, the Timberwolves (pro basketball team) mascot, comes. All of Apple Valley comes. The local hamburger place donates its weekend’s proceeds to the event. Six thousand graduates of Eastview High School over the last ten years have heard of HD.

BJ’s mother, now in the late stages of her disease, far from being shunned in the community, as so many others with HD seem to be, has been a welcomed spectator throughout his basketball career. A college senior in 2009, BJ captained his team to a 30-1 record and a quarterfinal appearance in the national tournament.

II.

It is an April evening in 2001, and Joe is sweating. He is in the midst of the first ADE (Auction-Dinner-Entertainment) for HD event, organized in honor of his recently deceased wife. He has packed them in at the Pavilion in Belle Plaine, Minnesota.

Joe knows just about everybody in this farming community of about 4,000 people, about 40 miles southwest of downtown Minneapolis. Joe is an auctioneer, soon to be inducted into the Minnesota State Auctioneers Hall of Fame, and even when the economy is pretty good, auctioneers are well known in the community.

Everyone has come to the event; you couldn’t stuff another person in the room, and it is hot. There is food, drink, a silent auction, and a live auction. There are long fold-up tables and chairs with paper tablecloths; large vats of mashed potatoes with gravy, corn, potato salad, and slaw; thin-sliced ham and turkey, and brownies for dessert.

Every barber shop, restaurant, and gift shop in a twenty-mile radius has donated something for the raffle or the silent auction. A local artist’s painting and a large recycled plastic porch rocking chair are among the live auction items.

Joe has shaken hands with everyone, finished the raffle, and is just now completing the live auction. He has poured his heart and his soul into this event.

“Just one more thing,” he says. “We thank you for everything you have done for us tonight. But just one more thing before we go. My wife had difficulty brushing her teeth because of her HD. So I bought her an electric toothbrush, and it made that part of her life just a little bit better. If she needed an electric toothbrush, I’m sure there’s someone else out there with HD who could use an electric toothbrush too. I’m going to stand up right now and pledge to buy a $30 electric toothbrush for someone else with HD.” He voice cracks slightly. “Who else will stand up with me and buy a toothbrush for somebody with HD?”

One person stands up, then another, then a whole family, a whole table, and pretty soon at least two thirds of the people in the room are standing.

Tears mixed with sweat, people applauded for a long time, and I just about fell off my chair. I had over one hundred toothbrushes and a story of love to hand out to my HD patients that year. And every year since then, thanks to Joe and his family and the community of Belle Plaine.

III.

It is a frigid night in February, 2005. The Midwinter Blast is a fundraising event to support the HD Center of Excellence that I direct in Minneapolis. This one has a live auction, too, right before the entertainment. It is Joe from Belle Plaine at the microphone.

Maybe what happened next has to do with how Joe ended up in the Hall of Fame. Maybe it’s one of those Minnesota things. Maybe I am naïve and it was all a contrived gimmick. It was amazing, nonetheless.

There were three or four prizes, a trip to somewhere, an autographed celebrity item, which sold for modest amounts. But during the auction, we in the audience were passing a water pitcher, an ordinary clear plastic institutional water pitcher, around the tables, with the instruction to add some cash to it, and it would be auctioned off at the end. Dollars, quarters, ten-dollar bills, whatever.

At the end it was time to auction off the water pitcher. Bid, bid, bid, Joe’s got them going, and pretty soon the pitcher has sold for $2000 to a lady from Burnsville. “Take it back,” she says. “Sell it again.” The next time it goes for $1500. “Do it again,” the second pitcher-winner says. “Sell it again,” the third winner says.

Four times they sold the water pitcher, for $1500-$2000 each time. An anonymous donor (we found out later) matched the auction bids that night. In the end, a plastic jug of dollar bills (which none of the winners kept) raised over $10,000 for Huntington’s disease care and services.

IV.

2009 is the fifth year of the “JJ” Golf Tournament, the second year I have attended. “JJ”, as I will call him, is a former hockey star of the 1970s, and I suspect a class prankster, from Bloomington Jefferson High School, in a Minneapolis suburb. He had a good life, a beautiful wife, and two nice kids, before HD tore his life apart.

His wife, although still involved, has ended the marriage, and HD and a Y chromosome interfere with JJ’s ability to work, cook for himself, and organize his life. He is skinny, has severe chorea (the involuntary reaching and lurching movements that make non-understanders recoil from people with HD), no longer drives, and struggles to manage his daily affairs.

So what happens? His high school buddies – mostly from Jefferson, but some from archrival Bloomington Kennedy, some of whom he had played with on community teams as a kid – get together to create a trust fund for JJ and his kids, help him organize his medical and financial affairs, make sure he eats, and drive him to appointments.

These are men doing all this, mind you, not their wives. A hundred and forty people, presumably JJ’s friends, or friends of his friends, show up for a charity golf tournament to support JJ. At the post-golf dinner, the Jefferson guys were on one side of the room, and the Kennedy guys on the other, chucking memories and barbs and gentle threats at each other throughout the dinner, all in good fun, and all for JJ.

Guys, how many of YOUR high school classmates would show up at your golf tournament, drive you to your doctor’s appointment, and help you write your checks?

V.

The week before the JJ Golf Tournament, I saw Paul, one of my long-time HD patients. He came this time with his daughter, who told me this story about her daughter, Ellen.

Ellen was in fourth grade this spring. At her elementary school in White Bear Lake, fourth-graders are invited to become “Core Values Leaders.” To become a leader, the student has to propose a “Core Values Initiative” and explain why it is important and reflects certain core values. The selected projects are carried out by the class.

For Ellen, who loves her grandfather, and who has attended HD Hoop-a-thons every one of her ten years, it was a no-brainer to propose a “Fun Run for HD” to take place during recess (and a no-brainer for the teachers to accept her proposal).

The kids put up posters around the school and all the grades contributed pledges, the moms made sure each kid had a little prize at the end of the run, and Ellen rummaged around in her dresser drawers where she has many HD Hoop-a-thon T-shirts, so that each kid could wear an HD T-shirt on the Fun Run day. At the end of recess that day, Ellen had collected $680, which she presented to her grandfather to give to HD research.

Closing thoughts

As it passes from generation to generation, HD insinuates itself into the fabric and history of a family and community. I have heard many stories of sadness, scorn, and hopelessness among my patients. But I hope that these tales of humanity and generosity will serve as a reminder that families, friends, and communities have the potential to do great good – and that the goodness, in turn, will rub off on others in ways that we may never know.

All of the stories I have told have to do with raising money, but you need to know that the generosity of these families and communities does not stop at the checkbook.

Paul and a number of his family members have participated in HD research studies, as has JJ, and some of Joe’s children. Paul will tell you proudly that tetrabenazine is available in the United States today because of him!

The lady from Burnsville not only bought a pitcher of money and then returned it, but along with her daughter, opened a group home for people with HD, which has been a stunning success and help to the community.

BJ’s mother, who worked on advocacy with the HD Chapter for many years, lives in the group home.

And BJ, when he addressed the World Congress on Huntington’s Disease in Vancouver last month, had no idea that the Hoop-a-thon that he started half a generation ago has empowered another ten-year old to bring her energy and creativity to the fight against HD.