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OneLegUpAlex Talks Adapting To An Ostomy 34 Years Ago 10-5-25 · OneLegUpAlex Media

• 0:00
  Speaker 1: All right, Well, we all know the Yanks crap the
• 0:02
  Speaker 1: bed today, and that's a very fitting toun because it
• 0:06
  Speaker 1: is OSAME Awareness Day. And that's where I feel like
• 0:09
  Speaker 1: the silver lining of today is is that even though
• 0:12
  Speaker 1: the Yanks lost in horrible fashion, I can sit here
• 0:17
  Speaker 1: and say I'm able to talk about it because of
• 0:21
  Speaker 1: the story that almost thirty four years ago doctors made
• 0:28
  Speaker 1: the bold decision to put that osteme on me. Look,
• 0:31
  Speaker 1: I just shared the Queen's College Secrets thing, but I've
• 0:34
  Speaker 1: taken that awareness to Washington this year. And as I
• 0:37
  Speaker 1: sit here, we are in a shutdown again, and I
• 0:42
  Speaker 1: feel like we've gone through this month after months since
• 0:44
  Speaker 1: that Washington trip in March. But the fact that organizations
• 0:49
  Speaker 1: like the United OSME Association of America, the United OSME
• 0:52
  Speaker 1: Association of America, and the Digestive Disease not to No
• 0:56
  Speaker 1: coalition exists give me hope that we can run above
• 1:00
  Speaker 1: these shutdowns and continue to fight for the funding that
• 1:04
  Speaker 1: has deserved and the accessibility that deserved for people who
• 1:08
  Speaker 1: may not be able to get their medical supplies in
• 1:14
  Speaker 1: the right way or the proper way. But personally, I
• 1:21
  Speaker 1: had never wanted to really lean into the ostome because
• 1:26
  Speaker 1: you know you can't see it. God forgive me for
• 1:30
  Speaker 1: saying sometimes you can smell it. It's awful, But that
• 1:37
  Speaker 1: was his plan, and that is why I'm here today.
• 1:42
  Speaker 1: An addition of all the support of my mom my dad,
• 1:46
  Speaker 1: who thirty four years ago had to truly adapt with
• 1:50
  Speaker 1: me to these ostomy supplies, I'm here because of it,
• 1:57
  Speaker 1: and there's no doubt about it. So to be accepted
• 2:00
  Speaker 1: by the UAA, to be advocate on their behalf. Going
• 2:04
  Speaker 1: from that Queen's College Secrets page to Washington, DC in
• 2:07
  Speaker 1: twenty twenty five, it's a jump. It's a jump worth doing,
• 2:12
  Speaker 1: and I'm proud that I was able to be there.
• 2:14
  Speaker 1: But I'm also grateful to be accepted by the ostuemic
• 2:18
  Speaker 1: community because I don't often think about it as something
• 2:27
  Speaker 1: to fight for, but being in DC open my eyes
• 2:31
  Speaker 1: to the Yes, I'm able to and thankfully able to
• 2:35
  Speaker 1: get my supplies, but there are millions out there that
• 2:38
  Speaker 1: may not be able to. So why not fight for
• 2:41
  Speaker 1: those who aren't able to have that accessibility? Why not
• 2:45
  Speaker 1: make it more accessible? Why not bring more awareness to
• 2:48
  Speaker 1: the osteme community, the one million of us. And then
• 2:53
  Speaker 1: I listen to Anthony Gerdono his story at the golf
• 2:57
  Speaker 1: outing in June, and it does give me hope that
• 3:02
  Speaker 1: as I get older, this can sustain. I often wonder,
• 3:08
  Speaker 1: you know, how long is it all gonna stay together
• 3:11
  Speaker 1: for this Austin how many years? While Anthony and a
• 3:15
  Speaker 1: few others give me hope it can last for a
• 3:17
  Speaker 1: long time. And that is the importance of community and
• 3:22
  Speaker 1: what I've realized in twenty twenty five. Last year I
• 3:26
  Speaker 1: was simply just an ambassador, thankfully thanks of Janine Gliba.
• 3:30
  Speaker 1: But this year I felt like I was in it
• 3:35
  Speaker 1: to be an advocate and to share my I don't
• 3:40
  Speaker 1: know if it's dramatic call that testimony, but my testimony
• 3:44
  Speaker 1: that if the doctors didn't do this procedure almost thirty
• 3:49
  Speaker 1: four years ago, I don't know if I would be
• 3:51
  Speaker 1: here talking to you about this vital medical phenomenon known
• 4:02
  Speaker 1: as the colostomy, iliostomy and the ostomy. So here at
• 4:08
  Speaker 1: one leg of Alex adapts to the one million plus
• 4:12
  Speaker 1: that have an ostemey. Today, Happy OSME Awareness Day, and
• 4:16
  Speaker 1: we won't keep bringing awareness, not just on October fourth,
• 4:19
  Speaker 1: but every day that there are stories, there are threats
• 4:23
  Speaker 1: to the supplies and the coverage of supplies. We will
• 4:26
  Speaker 1: be there to cover it on one leg of Alex
• 4:30
  Speaker 1: because I've got an interest in it to say, well,
• 4:34
  Speaker 1: if God blessed me with the right supplies thirty four
• 4:37
  Speaker 1: years ago, why not pass it on to so many
• 4:42
  Speaker 1: others that need the support, that need the funding. Because yeah,
• 4:46
  Speaker 1: Washington may be shut down now, but the fight should
• 4:49
  Speaker 1: not be shut down. They should not discourage us from
• 4:52
  Speaker 1: continuing to fight for accessibility and push for it and
• 4:57
  Speaker 1: do those forums every spring, every fall, because not only
• 5:04
  Speaker 1: are you advocating with those in Senator Booker's office, Senator
• 5:08
  Speaker 1: Shower's office like we were, you're also building the connections
• 5:11
  Speaker 1: in the community and finding out you're not alone in
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  Speaker 1: this and you can adapt because here one legal alex
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  Speaker 1: a reminder is we're always adapting. So happy United Ostomey
• 5:26
  Speaker 1: Awareness Day. And may that awareness become accessibility driven. For
• 5:35
  Speaker 1: those in power and in leadership. May they hear us
• 5:40
  Speaker 1: and say, yes, we understand you, not just when the
• 5:46
  Speaker 1: government's open, but even when shutdowns happen and the threats
• 5:52
  Speaker 1: of all this funding happens because of the shutdown. As
• 5:56
  Speaker 1: my friend Daniel Morgan can attest, we've got to think
• 6:02
  Speaker 1: that We can overcome that shutdown every time because the
• 6:08
  Speaker 1: voices of the millions will be the majority, and that
• 6:15
  Speaker 1: majority is us, we the people, not we the government.
• 6:23
  Speaker 1: So don't get discouraged this government shut down. This asks
• 6:26
  Speaker 1: me where to stay, cause there are organizations like the
• 6:29
  Speaker 1: UA fighting for you.