Washington D.C ALS Advocacy Days

Main----------------------------------May

On May 12th, Joan and I traveled to Washington D.C. to visit with my family and to join around 800 other people to petition Members of Congress to support the ALS National Registry and the DOD funding into why our troups were contracting als at a two to one ratio over non military people.     I want to thank my entire family for helping to make this trip possible. Without their moral and financial support we would not have been able to go.

May 13th, Joan and I went to church with Pam, Bo and Kirstin.    We met some of the nicest people you would ever want to meet and the mininster's sermon really touched base with me.    Afterwards we went out for a Mother's Day Dinner and had a great time.

Checking into the Renasaunce Hotel where the convention was held. Big place for a country boy.

Many thanks to Christine Soehl for the extra effort made in our behalf. She deserves an applause and a great big Thank You.

Steve and I were internet pals before the convention. Finally we met in person and I don't think we quit laughing the whole time. Super guy with a super attitude.

The opening ceremony is getting ready to start. Around 800 people attended the conferences.

Pam and Bo made sure we got settled in then toured Washington a little. Here we are meeting between events.

Joan and I getting outside for a fresh breath of air and to be closer to the food!

Dinner time! Good food, great company. Thank You Joan! You did the work, all I did was be present.    Note: Those of you who are spouses and carers know what Joan went through. It's a team effort, with half the team disabled the other half takes up the slack.

The gang is here. All friends from the ALS chatroom. Left to right, Ken, Joe, Steve and myself. Great bunch of guys all afflicted with ALS.

People begin arriving at the World War II Memorial for the candlelight memorial. This was doubly hard for me.. I am fighting for the right to live. My father fought in WWII for my right to be here and wage another battle.

Joan is with me. This is as hard on her as it is me. She knows I may be one of those being remembered in the future.     Through all of this I have never heard the first complaint about her having to help me. She is always right beside me through the good and bad.

What do you see in this picture? I see a Grandmother, Grandfather, Mothers, Father, Sister, Brother, Aunt, Uncle, Daughter, Son and friend. ALS affects all of those around you. That's why we came to Washington.

Another day, more pals share friendship and support.

During a break we went and toured the Museum of Natural History. I want to bring the Grandkids back to see this.

The Kentucky Advocates Jim Strader took the picture Front Row Tanner (Mitch and Kay's Son) Second Row (In the wheelchairs) Mitch Ensor (PALS), Bryan Osburn (PALS) Third Row Shelby (Mitch and Kay's daughter) Back Row Jenny Allen (ALSA Kentucky Director) Kay Ensor (Wife and Carer), Joan Osburn (Wife and Carer), Patricia Peak (ALSA Patient Services Coordinator)

Meeting with Congressman Ben Chandler. Really nice guy and is in agreement with our needs.

Congressman John Yarmuth understands our need for funding and agrees that the research needs to be done.

This is not a political advertisement, just the facts. 5-16-07 I don't have a picture of Hal Rogers or even his office. We weren't welcomed into the office since he didn't have room for  wheelchairs. I guess I could have taken a picture of the door as that was as far as we got. Our meeting took place in a crowded noisy hallway. I could probably post a pic of his aid but she was less than cordial. Her actions and mannerism conveyed the impression that we were taking up her valuable time. Several Congressmen were not able to meet with us and that was expected. None of the others treated us rudely. I don't care who you are or what title you have. If you supposidly represent the people, and some of those people drive 1000+ miles to see you,  and they have an appointment, at least treat them cordially or have staff that have the ability to do so. As of this posting Congressman Rogers does not see a need to support a national als registry or the DOD funding. If he represents your district, please write, call, or email him and ask him to support ALS research.

Senator Bunning met with us in person and listened to our Advocacy. Thank you Senator Bunning for your time and hopitality. I would post a pic but my camera batteries died as I went into the office. I will attempt to get one to post from one of the other advocates.

Senator McConnel was in session at our meeting time. He had the courtesy to send his Aid to speak with us and then follow up with a letter. His aid also escorted us through the Capital so we could reach our next destination without getting the wheelchairs soaked by a thunderstorm. Thank you very much for your consideration and hospitality. Letter and pic will be posted as soon as I can scan them.