A shocking video that went viral in September spurred the Huntington’s Disease community into action. The ten-minute video showed a young man in West Virginia, Jeffrey Bane, being held face down on the ground by four police officers, his face ground into the pavement, screaming for help and choking on his own blood. Bane has HD and had been stopped while taking his two young children to the park because he looked “suspicious” and appeared to be under the influence of alcohol or drugs.
Frances Saldaña, co-founder and president of HD CARE at University of California, Irvine, decided to take action. She first contacted Louise Vetter, CEO of HDSA (Huntington’s Disease Society of America) and asked that HDSA get on the agenda and have a booth at the 121st annual IACP (International Association of Chiefs of Police) conference in Orlando, FL, Oct. 25-28, for the purpose of educating law enforcement officials about HD. Vetter responded to the request by saying that her “advisors” felt it was better to build a strong strategy and relationship with the IACP organization before setting up a booth in October.
Vetter added that HDSA believed personal conversations with the police departments and using the “Tool Kit” (available on www.hdsa.org) would do much more to build relationships than setting up a booth, and that they would certainly work on getting on the agenda for next year. She said people wouldn’t be able to stop by the booth and have a conversation, and it wouldn’t do much good to develop a relationship with the law enforcement community with a booth.
In an email to H4HDI (Help 4 HD International), Saldaña asked if the organization would be interested in stepping in since HDSA would not. Passionate that this was an opportunity that the HD community could not overlook, Saldaña said, “Yes, they [law enforcement] are at fault for lack of education and mishandling situations like this, but we can also take some of the blame for not being pro-active enough to educate our police about HD.”
It was obvious from community response that Saldaña was right; something HAD to be done NOW. The original video, which has been reposted on multiple sites including personal blogs and news media sites, has been viewed over 120,600 times. The enhanced video, which can be viewed here (http://youtu.be/0Nb2ZPXuWIs) has an additional 25,438 views. “Justice for Jeffrey Bane,” a Facebook page set up by Bane’s brother, currently has 3,722 likes. Many members of the HD community expressed outrage and frustration, sharing their own experiences with law enforcement as well as those of their loved ones. A common thread quickly emerged: many of our loved ones with HD were being stopped and picked up because police officers mistakenly thought they were intoxicated or under the influence of drugs.
Melissa Biliardi, president and CEO, Katie Jackson, vice president, of H4HDI decided this was a project the advocacy organization needed to tackle. Biliardi contacted IACP and learned that it was too late to get on the speakers’ agenda this year, but that we could reserve a booth and talk to attendees and distribute materials.
Since the convention was taking place in Orlando, and I live in Florida, they asked me to be the point person. We recruited HD advocates Marsha Miller to write the copy for a trifold pamphlet and Diana Kastelic to help with graphic design, created a donation site to fund the expenses for the convention, and recruited HD community members to help man the booth. Our donation site quickly raised $4,660, and Lundbeck Pharmaceutical generously gave us a grant for $2,000 for the conference, followed by a second grant of $2,000 for educational materials.
Approximately 16,000 people from 84 countries attended the convention. About 250 people over three days stopped to talk with us. Of those people, only a handful knew for sure what HD is; most had never heard of it! We spoke with people from all over the U.S., Canada, Nigeria, the Bahamas, Ireland, England, Iraq, and Brazil, just to name a few of the countries represented there. One of the things that struck me the most was the interest and compassion that people expressed. They were shocked by our stories, and nearly every person we spoke with offered compassion and prayers, expressed a desire to learn more, and wanted more training. I left there feeling like we had expanded knowledge about HD exponentially.
T.W. Baker, Sr., staff sergeant at the Indialantic Police Department in Florida, said that he was so appreciative of the information we’d shared with him. He said that whenever a new family moves into his community, he makes it a point to go meet them and see if they have any special needs or circumstances. He added, “I try to teach my officers to look beyond what they see at first sight.”
Todd Kirchgraber, training director at St. Petersburg College, located in St. Petersburg, FL, expressed an interest in partnering with us to send trainers to advanced law enforcement officer training all over the country.
Vicki Owen, an HD advocate who lives in Sun City, FL, with her husband Tom, who was diagnosed in January 2010, helped hand out pamphlets and talked to attendees. She said the most important thing she came away with from the conference was “how receptive they were to hear our stories and how readily they gave us ideas.”
Other advocates who helped at the booth were Saldaña and Jeannie and Bob Grundborg. Both Frances and Jeannie lost two children to JHD; Frances has a son who is now in the end stages of the disease. My son, Randy Thomason, helped with setup of the booth.
Despite the fact that we had a comparatively small, low-tech booth (think shooting ranges, semi trucks, armored cars, and a helicopter!), interest in our message was high, and we had a much greater attendance than many of the more “advanced” exhibits. People were genuinely interested in the pictures, videos, and stories we had to share.
Our work is just beginning, though. There is much left to do, including filming and production of a training video and following up with the many people who shared their contact information with us. It’s an exciting journey, and one that proves that grassroots efforts DO make a difference!