ALS Advocacy Days in Washington in May - A New Wrinkle
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halfin
Senior member
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- Jun 29, 2009
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- 08/2009
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What are people's experiences with the ALS Advocacy Days? This would be my first time since diagnosis and it sounds like it could be interesting. Quite a long way to travel though. And of course it is hard to predict how well I will be getting around and communicating by then. But no doubt much easier this year than next year.
mare
Senior member
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- Jun 5, 2008
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- Lafayette Hill
Hal-
We went last year. At that time, Jim was still walking with a cane for short distances, had AFO's, used a transport w/c for longer distances. No speaking or swallowing problems, no problem with upper body.
We live outside Philadelphia, so we drove to DC on Sunday afternoon. (it was Mother's Day- that made it a bit difficult. Both of our mothers are living, although elderly; I am a mother, and it was the first Mother's Day for our daughter-in-law.)
We really only had time for the dinner/barbecue on Sunday, then the candelight service, which was very moving: sad, yet hopeful.
Monday was a full day of updates on research. Trying to keep up with the "lingo"- realizing these people are really, really smart!- but also realizing they are working really hard for us; they are really hopeful about what they are doing & finding.
Tuesday is Capital Hill Day- you are assigned to visit various representatives; the more experienced to the Senators. That is in theory! When we were there, the Congress was in recess, and very few legislators were available. We met with their staff- who were very supportive & interested; at least ours were. But, ours had already signed up for the DOD funds that were being advocated for.
What we came away with was: it was very informative & we were encouraged by the progress of the research and the quality & dedication of the people doing the research.
We met some wonderful people. Many of the staff from our clinic were there, and we had lunch together & it was a great bonding experience.
It was however difficult for us, & me particularly. Pushing a manual wheelchair around Capitaol Hill is not easy. And I am not a weakling!
We actually have been discussing this, whether we are going this year. It is SO important- particularly to have ALS people there, gives great impact- but it will be so much more difficult this year. I have guilt saying that, since last year we saw PALS at all stages- many with bi-pap, PEGs, some with trach & vents. The sacrifice they made to be there is beyond comprehension! I just don't know what we will decide.
I'm sure Zenarcher (Jeff) can tell you more. He is a true leader in this cause!
We went last year. At that time, Jim was still walking with a cane for short distances, had AFO's, used a transport w/c for longer distances. No speaking or swallowing problems, no problem with upper body.
We live outside Philadelphia, so we drove to DC on Sunday afternoon. (it was Mother's Day- that made it a bit difficult. Both of our mothers are living, although elderly; I am a mother, and it was the first Mother's Day for our daughter-in-law.)
We really only had time for the dinner/barbecue on Sunday, then the candelight service, which was very moving: sad, yet hopeful.
Monday was a full day of updates on research. Trying to keep up with the "lingo"- realizing these people are really, really smart!- but also realizing they are working really hard for us; they are really hopeful about what they are doing & finding.
Tuesday is Capital Hill Day- you are assigned to visit various representatives; the more experienced to the Senators. That is in theory! When we were there, the Congress was in recess, and very few legislators were available. We met with their staff- who were very supportive & interested; at least ours were. But, ours had already signed up for the DOD funds that were being advocated for.
What we came away with was: it was very informative & we were encouraged by the progress of the research and the quality & dedication of the people doing the research.
We met some wonderful people. Many of the staff from our clinic were there, and we had lunch together & it was a great bonding experience.
It was however difficult for us, & me particularly. Pushing a manual wheelchair around Capitaol Hill is not easy. And I am not a weakling!
We actually have been discussing this, whether we are going this year. It is SO important- particularly to have ALS people there, gives great impact- but it will be so much more difficult this year. I have guilt saying that, since last year we saw PALS at all stages- many with bi-pap, PEGs, some with trach & vents. The sacrifice they made to be there is beyond comprehension! I just don't know what we will decide.
I'm sure Zenarcher (Jeff) can tell you more. He is a true leader in this cause!
rknt50a
Distinguished member
- Joined
- Aug 14, 2006
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- 215
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- Lost a loved one
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- 09/1996
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- US
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- IN
- City
- IN
I have gone the last six years. Mom died from ALS many years ago. I'm healthy (knock on wood) and travel isn't difficult for me.
My observation is that for people with ALS it's a difficult trip that can be rewarding.
The conference content doesn't change much from year to year, so the first year you absorb the most.
The part that I find most important is the day on Capitol Hill. That's also the day that is exhausting, especially for PALS. Your local ALSA chapter sets up group appointments with each Senator's and each Congressperson's office. You keep your fingers crossed that the chapter doesn't schedule appointments that crisscross great distances between the office buildings. Typically in each office you'll meet with a legislative assistant who handles health matters. Every now and then you'll hit the jackpot and get the legislator himself or herself. You'll have an agenda of priorities from ALSA and you'll have an opportunity in the meetings to speak to whatever issues you feel are important. It's a great exercise of democracy. It's a great opportunity to teach people about ALS.
I've been doing it long enough that the staff members remember me, and I feel like they really remember what ALS is (and what it needs).
The people I've known who have gone feel exhausted after the day on Capitol Hill but they also feel that they've accomplished something.
You can also do advocacy very effectively in your own back yard. Your odds of getting to a Senator or Congressperson in person are greatly increased if you make an appointment in the local office for when the legislator is back in the district. It's a lot easier to get face time in the district.
I hope my experience might be helpful.
This year I'm looking forward to the outward display of the Piece by Piece exhibit to perhaps inform even more people in Washington about ALS.
My observation is that for people with ALS it's a difficult trip that can be rewarding.
The conference content doesn't change much from year to year, so the first year you absorb the most.
The part that I find most important is the day on Capitol Hill. That's also the day that is exhausting, especially for PALS. Your local ALSA chapter sets up group appointments with each Senator's and each Congressperson's office. You keep your fingers crossed that the chapter doesn't schedule appointments that crisscross great distances between the office buildings. Typically in each office you'll meet with a legislative assistant who handles health matters. Every now and then you'll hit the jackpot and get the legislator himself or herself. You'll have an agenda of priorities from ALSA and you'll have an opportunity in the meetings to speak to whatever issues you feel are important. It's a great exercise of democracy. It's a great opportunity to teach people about ALS.
I've been doing it long enough that the staff members remember me, and I feel like they really remember what ALS is (and what it needs).
The people I've known who have gone feel exhausted after the day on Capitol Hill but they also feel that they've accomplished something.
You can also do advocacy very effectively in your own back yard. Your odds of getting to a Senator or Congressperson in person are greatly increased if you make an appointment in the local office for when the legislator is back in the district. It's a lot easier to get face time in the district.
I hope my experience might be helpful.
This year I'm looking forward to the outward display of the Piece by Piece exhibit to perhaps inform even more people in Washington about ALS.
mare
Senior member
- Joined
- Jun 5, 2008
- Messages
- 771
- Reason
- Lost a loved one
- Country
- US
- State
- PA
- City
- Lafayette Hill
rknt-
I agree with what you say. It is very important work; advocacy by ALSA has produced many changes recently.
It was a difficult trip that WAS rewarding.
Now, we were newbies, but we didn't have the same experience as you describe on the Hill. As newbies, we were assigned with other, more experienced people (as it should be). One was from ALSA (non-volunteer), one a staff person from one of the clinics, and 3 PALS. We were told, if we want, to just give a brief comment about why this was important to us. Obviously, seeing/hearing PALS gives a better impact than others telling about it. This was difficult for my husband the first 2 offices. He did get emotional.
Our ALSA person had his points to make: "...we are asking for 1, 2, 3".
The legislative aide asked a few questions or made a few comments, and that was it.
We spent 10-15min. tops in each office. (not including the time we had to wait)
Yes, it was exciting to walk the halls, get an idea & see how the process works. We were excited about doing this; however, I have to say, as far as our experience we were a little disappointed with this day.
I don't mean to take away any of the significance or importance of the day. And I realize we have to be willing to give some time- "sacrifice"- if we expect to get anything.
We are glad we went last year; just not sure about this year.:-(
I agree with what you say. It is very important work; advocacy by ALSA has produced many changes recently.
It was a difficult trip that WAS rewarding.
Now, we were newbies, but we didn't have the same experience as you describe on the Hill. As newbies, we were assigned with other, more experienced people (as it should be). One was from ALSA (non-volunteer), one a staff person from one of the clinics, and 3 PALS. We were told, if we want, to just give a brief comment about why this was important to us. Obviously, seeing/hearing PALS gives a better impact than others telling about it. This was difficult for my husband the first 2 offices. He did get emotional.
Our ALSA person had his points to make: "...we are asking for 1, 2, 3".
The legislative aide asked a few questions or made a few comments, and that was it.
We spent 10-15min. tops in each office. (not including the time we had to wait)
Yes, it was exciting to walk the halls, get an idea & see how the process works. We were excited about doing this; however, I have to say, as far as our experience we were a little disappointed with this day.
I don't mean to take away any of the significance or importance of the day. And I realize we have to be willing to give some time- "sacrifice"- if we expect to get anything.
We are glad we went last year; just not sure about this year.:-(
rknt50a
Distinguished member
- Joined
- Aug 14, 2006
- Messages
- 215
- Reason
- Lost a loved one
- Diagnosis
- 09/1996
- Country
- US
- State
- IN
- City
- IN
mare,
Point well taken. The chapter staff that sets up the appointments and leads the meetings has a lot to do with how the encounter goes. In my mind, those meetings are a lot like sales calls. Our chapter used to have an executive director with sales experience and she was good about drawing all of the people from our state into the meeting conversations with the legislative assistants. I'm sure that much depends on who leads the delegation and the size of the delegation.
R
p.s. You're from PA, I see. Last year late in the day I was walking alone going into one of the Senate office buildings and a man stepped up behind me to open the door (that doesn't happen much these days). It was Sen. Specter. He saw my "Strike out ALS" sticker and stopped to talk for a moment and volunteered that they needed to get us more money. The delegation that had met with him obviously made an impression.
Point well taken. The chapter staff that sets up the appointments and leads the meetings has a lot to do with how the encounter goes. In my mind, those meetings are a lot like sales calls. Our chapter used to have an executive director with sales experience and she was good about drawing all of the people from our state into the meeting conversations with the legislative assistants. I'm sure that much depends on who leads the delegation and the size of the delegation.
R
p.s. You're from PA, I see. Last year late in the day I was walking alone going into one of the Senate office buildings and a man stepped up behind me to open the door (that doesn't happen much these days). It was Sen. Specter. He saw my "Strike out ALS" sticker and stopped to talk for a moment and volunteered that they needed to get us more money. The delegation that had met with him obviously made an impression.
mare
Senior member
- Joined
- Jun 5, 2008
- Messages
- 771
- Reason
- Lost a loved one
- Country
- US
- State
- PA
- City
- Lafayette Hill
Sales calls- good way to describe it.
I understand that the leader can be a major factor in the experience. And actually, we felt he was good. He just felt that it was best to keep it brief and on point.
Sen. Spector has always been an advocate for health research & benefits (even before his own issues), although he is waivering a bit lately. He had said he would sign Sen. Casey's letter to Congress calling for DOD funds. However, he did not! Didn't get the details on why. Disappointing.
I understand that the leader can be a major factor in the experience. And actually, we felt he was good. He just felt that it was best to keep it brief and on point.
Sen. Spector has always been an advocate for health research & benefits (even before his own issues), although he is waivering a bit lately. He had said he would sign Sen. Casey's letter to Congress calling for DOD funds. However, he did not! Didn't get the details on why. Disappointing.
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