Taking editorial liberties, the following is lifted and paraphrased from a note from a good friend to the HD community.

The Jeffery Bane incident got international exposure when a story about Bane, a pHD, being assaulted and arrested by law enforcement in West Virginia for public intoxication, resisting arrest and drug use when a blog entry went viral. [www.rawstory.com]

After hearing about this incident, a group of HD Family Advocates across the US got together in hopes of setting up a booth at the 121st International Association of Chiefs of Police Conference that will be held in Orlando, Florida on Oct. 25-28 to educate the approximate 14,000 Chiefs of Police who will be attending this conference about Huntington’s Disease in hopes of preventing more tragedies like the one in West Virginia from happening again.

The HD Family Advocates contacted HDSA for assistance in paying for a conference booth and for copies of HDSA’s Law Enforcement Toolkit. Reaching out to HDSA was met with strong resistance “--- advisors felt it is better to build a strong strategy and relationship with the IACP organization before setting up a booth in October. They feel that personal conversations with the police departments and using the "Tool Kit" would do much more to build relationships than setting up a booth, and that they will certainly work on getting on the agenda for next year.” Or in words of an old man from the south of Maryland, HDSA does not support or become involved with advocate efforts not initiated from the mother ship nor are they willing to take advantage of current social and political interest in excessive law enforcement brutality by not supporting this particular outreach effort at this particular time.

Seems to be a no brainer. “Of course, HDSA will help pay the $2,000 booth fee. And, a HDSA representative will support The HD Family Advocates booth to pass out copies of The Law Enforcement Toolkit, meet and connect with law enforcement officers from across America.” But then, HDSA is HDSA.

For the powers to be: Do not know the protocol in passing on information to this forum about supporting the HD Family Advocates efforts at the Law Enforcement Conference in Orlando. Maybe you can help.

From the south of Maryland,
Fred Lothrop

Now this is a shame, how do we get these, our agencies, to get their heads out of the sand. Thank you Fred

A clarification --- To my knowledge, HDSA has not committed not will it commit to supporting the HD Family Advocates in Orlando. My "no brainer" should be taken in the contest of "wouldn't be lovely if HDSA ------"

Fred Lothrop

Thanks for the post. It was to say the least handled poorly.

Most or probably the majority of the public does not know what HD is or how it affects people. Education is the only way. I don't think anyone is going to search out HD and become familiar with it unless you hand them the information and explain and hopefully then a few will understand. Granted, Law Enforcement must protect themselves and others. This obviously went over the top.

Mike

Maybe we should get a medical bracelet so police would know.

Well the policy here is to support any and all advocacy efforts that Steve and I are a part of. Thanks for your post.

Our advocacy group has the booth and we are going! We are working with Melissa Billardi and her colleagues at Help 4 HD international. With input from the whole group, I wrote a flyer aimed at police in the field which we will be handing out. We will have a laptop presentation and link to informational pages developed for law enforcement on the Help 4 HD website and try to make connections so that HD families can be part of future training..

In April, Congress held a bi-partisan hearing on law enforcement and the disabled. The impetus was the death of Ethan Saylor, a young man with Down's Syndrome, who wanted to watch a movie again without paying for a second ticket. He refused to budge so three police officers threw him to the floor, crushing his larnyx and asphyxiating him in the progress. His aide begged the police to wait for his mother who had been called and was on the way but was ignored.

Articles in law enforcement journals acknowledge that mandates for training on dealing with the disabled are coming. It seems clear to me that the HD/JHD community must educate, not just our local police, but key national law enforcement organizations if Huntington's disease is to have a place in that training and its specific symptoms recognized as part of a disorder. This is the first IACPC convention since the Congressional hearings and too good of an opportunity to miss.

Here is the link to donate:

[www.firstgiving.com]

Thanks again Marsha and Steve. You are the best advocates.

I wish you luck in the educational process. I know there have been post in the past about law enforcement. You have to first get thier attention, then you can get their ear. Hopefully progress will be made.

Thanks so much,

Mike

Oh my gosh! Way to go Steve and Marsha, with or without hdsa! Thank you so much, I'm sure it will go very well!

Way back about 12 years ago, my daughter hit a curb and blew out a tire. She thought the best thing to do was to drive home on the rim. Of course she got pulled over. The policeman thought she was DUI. She told him she had HD. As luck would have it, his wife was a nurse who had actually worked with HD patients and he was familiar with it. Instead of escalating the situation, he called me and I got her and the car safely home. He took it upon himself to educate the entire department about Allison and I have to say that they really cared. Instead of harassing her, they took it upon themselves to watch over her and make sure she was safe. Some would even call me and ask how she was doing. There were a few more encounters with the police, but they were always kind and caring. Education does work!