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Prikvačeni tweet
On advocacy, lobbying and ethics (an
#ALS thread): In the spring of 2019,@alsassociation invited my cALS spouse and I to Washington, DC to take part in an Advocacy Day program, whereby we would meet with members of Congress and their staffs and advocate for our community. 1/18Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
John Robinson proslijedio/la je Tweet
3-6 FA revealed their excellence boards this morning, continuing to promote hard work at every level. Congrats to the Top FDC, Gun Section, FIST, Radar, and Ranger School graduates!
#MountainThunder#SwiftAndBoldpic.twitter.com/bVV3BlMHkA
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The
@iamalsorg Founder is a good person and an#ALS patient, like me. By his own admission, he founded the org to save his own life - and by extension, those of others. I cannot abide by unethical lobbying practices, in the name of advocacy. I continue to wish the org well. 18/18Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
In Jan 2020, I informed the chairman of the
@iamalsorg veteran's cmte that I was stepping away, due to an 'ethical disagreement' with the Founder (I have more documents than I'm sharing today). The Founder has inquired as to the nature of that disagreement. 17/18pic.twitter.com/ef1zkPlzUU
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As an active duty Soldier, retiring in less than a month, integrity and selfless service are paramount values for me. These are demanding values to adhere to, but when I come up short, I am willing to admit my shortcomings. 16/18pic.twitter.com/6jAhT6FLLc
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That ad is shown, in part, here. Note the web address is included. Highlighted is a lobbying-style narrative, assertively taking a share of credit for "driving a coalition of ALS organizations to fast-track $10 million in additional federal funding for ALS research." 15/18pic.twitter.com/fNTmsE1N0E
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Now, about that
@iamalsorg chief of staff search. Following the House approval of the $10M DOD ALSRP budget increase in July 2019 - the increase the Founder later denied claiming credit for in Dec 2019,@iamalsorg advertised in LinkedIn for the position of chief of staff. 14/18Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
The previous month, the Founder and I had a direct conversation, re: his criticism of
@alsassociation media practices. He offered that criticism or disagreement should not be conflated as an 'attack.' His words: 13/18pic.twitter.com/Ss8ODHhFJ2
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Then, the Founder said something pivotal: he assertively denied claiming credit for the passage of the $10M DOD ALSRP budget increase and asserted I was attempting to draw distinctions where none exist: 12/18pic.twitter.com/BX9LQ3mtyD
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I gently reminded the Founder, with a bit of humor, that at minimum, credit should be distributed a bit more widely than solely to the Founder, or his organization. I knew, as he did, the
@alsassociation role: 11/18pic.twitter.com/4aCkJMdcvL
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In December 2019, the
@iamalsorg founder implied responsibility for the@DeptofDefense ALSRP budget increase of $10M. 10/18pic.twitter.com/PMRAdGbCt6
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Increasing awareness to improve the lives of people is advocacy. Increasing awareness to improve a financial position is lobbying. Lobbying isn't a bad word, but it's gotten a bad rap. That's because some lobbying strays into the lane of what some would consider unethical. 9/18
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In fact, two weeks later,
@iamalsorg rolled out an extensive media campaign to increase awareness on vets/ALS issues, including videos and the intent to establish a cmte on vet affairs. I was invited to join that cmte: 8/18pic.twitter.com/SyrezLEy8w
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In Oct 2019, I reached out to
@iamalsorg to offer my help to increase awareness, re: veterans' issues, including vets' disproportionate representation as ALS patients. This is a role I had already begun to play with@alsassociation. It was a very good discussion: 7/18pic.twitter.com/E9gqai8hDm
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In July 2019, the
@DeptofDefense budget passed the House and shortly thereafter,@iamalsorg began seeking a chief of staff for their then-fledgling organization. More on that in a moment. The DOD budget included a $10M increase in their ALSRP, from $10M to $20M. Huge win. 6/18Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
7 months later, the
@iamalsorg Founder 'thanked'@alsassociation 4 'finally jumping on board' 2 spt building the ALS Caucus. The@iamalsorg leg affairs cmte had worked diligently 2 help increase the size of the Caucus. Minimizing the@alsassociation role was disrespectful. 5/18pic.twitter.com/7FPKWoFm9b
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Two weeks later,
@RepTerriSewell,@RepBrianFitz,@RepJasonCrow and@KenCalvert established a bi-partisan ALS Caucus, as scores of us visiting them, in person, had advocated for: https://sewell.house.gov/media-center/press-releases/reps-sewell-fitzpatrick-crow-and-calvert-launch-als-caucus … 4/18Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
.
@alsassociation led this effort with specific goals: increases to@CDCgov and@DeptofDefense ALS Research Prog (ALSRP) budgets; changes to@SocialSecurity Disability Insurance; and the establishment of an ALS Caucus. Ambitious, yet specific. 3/18Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
I'd been living with
#ALS for over a year and had no illusions about my own fate, but saw this as an opportunity to do good for others. In June 2019, at our own expense, we traveled to DC, met others like us & advocated in the halls of Congress. Spouse/me with@RepGolden: 2/18pic.twitter.com/YUNaCC5O0q
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When a former junior enlisted grunt gets frustrated you won’t take the bait, as he and his buddies drag a politician for not having the ‘right kind’ of military experience. BTW he’s a ‘man of the cloth.’
@tcburkejrpic.twitter.com/E8E0aNJKZN
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