Monday, May 19, 2014

"ALS Advocacy and an Inside Look in DC"

"ALS Advocacy: An Inside Look at D.C."

We returned from the 2014 ALS Advocacy Conference a little over a week ago. In some ways it seems like a lot of time has passed since we were there; but because of how vivid and meaningful the experience was it sometimes feels like we're just returning.

Most of you know the story of our planning on going in 2013 but having to cancel at the last minute because of a drug reaction. We are so appreciative of being given a second chance to attend this significant advocacy event. Our son and daughter, Jeremy and Megan, helped with the driving which helped make it more manageable.

Jeremy drew the short straw and drove the first leg of the trip. We left on Tuesday, May 6 at 9:15 a.m. after a hospice aide gave me my morning shower - my last until the morning after our return on Saturday, May 10. (Good thing I don't do enough to sweat and my family loves me, but we were in DC!)

We arrived safely at the JW Marriott in DC around 6:00 p.m. after two short stops and one major restroom stop which included our first on-the-road transfer to the collapsable shower/commode wheelchair purchased for us for our trip to Florida by the PHAALS (Playing Hardball Against ALS) organization. We were also slowed somewhat by the DC rush hour challenge.

When we got to our room we were amazed! It was a corner room which allowed us to see a broad area of DC and a bonus view of the Washington Monument! Oh, and it was unbelievably spacious. Since I now sleep in my power wheelchair and we had two double beds Jeremy was able to stay with us.

Since the conference didn't begin until Wednesday afternoon we contacted my cousin, Suse, who spends a majority of her time in DC helping with her grandchildren, about her meeting us at the hotel for lunch. We had a wonderful visit! I love my cousins even though I don't get to see them near as often as I'd like.

Megan and her son, Evan, flew to DC and arrived mid afternoon in time for the session and have a brief visit with her brother. Jeremy handed us off to Megan and headed to the airport for his flight home. (Starting to sound like a travelogue, right!?)

O.K., ready for some info about the conference itself? Well, the first session was really an interesting and informative time with the presenters sharing about the important work of the Department of Defense getting out information about the National ALS Registry and the information they are gathering and the way that potentially will make future research more successful. I am a strong advocate of the National Registry as one of the most hopeful tools for determining if there are causes and thus ways we might structure our lives and research to better develop a cure or treatment or preventive measures! If you are a PALS and have not registered, please, please, PLEASE, register!!!!!

Then, we started our preparation for our visits on Thursday to the hill. The emphasis was on how important it was that we were there and that we told ouur first person stories. There were 130 PALS at the conference and about 800 others - caregivers, staff, family members, etc. We received our final instructions over a fantastically delicious dinner with the others from area ALS Association Chapters. Part of the highlight of this time was meeting fellow PALS I've been friends with on Facebook. Being face-to-face with my PALS both tugged at my heartstrings and strengthened my resolve to continue the fight as best I can! Our physical realities are so different and yet what it takes inside to do the dance is amazingly similar! If any of you are reading this, I am so impressed with you!

Thursday morning we were shuttled to the hill where we met with three representatives and two senators. In most cases we met with aides. It was interesting though. We were told in some ways they are who you want to talk with because they are the knowledgeable ones on the staffs. There was no question they were attentive and interested in what we had to say. They had tears in their eyes as I also did as I listened to the stories of others. Seeing all the people meeting with the members of congress and all the meetings they had on their agenda it's pretty impressive what all has to happen in order for legislation to get through. There's plenty of inertia to help things move slow.

There was one visit that stood out that I simply must comment on. Representative Steve Stivers left another meeting to meet with us personally and spent almost 45 minutes with us. He was obviously quite knowledgeable about the disease and stated his support of our agenda. It was quite uplifting to really feel like we were heard.

By the end of the day we were pretty exhausted. We even missed one of our scheduled appointments because I simply could not go anymore. After a good night's rest we were back at it on Friday for sessions dealing with what's going on with research - still no breakthroughs but plenty of discoveries and new methodology to provide hope - not for us but future generations.

After lunch and a fantastic speech by a woman unable to move any part of her body but who had been involved in a project where she was able to move a robotic arm with her mind, the conference ended with an Expo. Wheelchair companies, speech device companies, breathing machines, etc. all had their most recent products on display. I was especially impressed with an assistive device ALS staffer who showed me some possible other solutions to my iPad and losing the ability to type issues.

After the Expo we enjoyed a visit with one of my grown YFers from my Worthington Youth Ministry days. Courtney brought her two daughters with her and we spent a delightful hour together.

Thank you all for your continued support!

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