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Posts tagged ‘JDRF’

King for a Day

Luke got to be an ambassador for JDRF/Nordstrom’s massive Beat the Bridge walk/run this year. It was started by a family 30 years ago when their son was diagnosed. Co-workers at Nordstrom chipped in, and it has grown into a $1.5M+ event with roughly 30k people turning out to walk and run.
It was admittedly a proud parent moment. Our family was part of the promotional video, Luke got to be on radio and TV, and he was indulged by the two older ambassadors and the many corporate teams we visited leading up to the event.
I was inspired and humbled by the people we met. Every corporate team had people walking for family or friends, and one team captain quietly told me she’d been doing Beat the Bridge for 20 years, since one of her two step-sons with T1D had died.  Many friends signed up to walk and run, and family and friends from all over contributed. We hoped Luke would see T1D as bringing something good his way for a change. We were coming out of a rough year with him realizing that T1D isn’t going away, he can’t control it, and not everyone has to suffer from its nasty low/high blood sugars.
He did revel in the attention, but he surprised me by shifting through different reactions to the event and T1D in just those few months. (Then again, why would something involving T1D be simple?)

  • First reaction: “I’m king of Beat the Bridge!” How else do you explain the concept of “ambassador” to a four-year-old?
  • Next reaction as the TV promos started running: “Hey, did you see me on TV? I’m on TV!”
  • But then: “I’m mad, because Beat the Bridge will stop diabetes, and I like to watch Batman when we do pod changes.” Uh, glad we’ve made pod changes so attractive!
  • And: “I don’t want anyone to see me on TV, because then they’ll know I have diabetes.” I think the cat’s out of the bag on that one, kiddo.
  • The morning after the event: “Beat the Bridge is over? Is diabetes over now?” Cue sound of parent’s heart breaking. Explain that scientists are still working on it, and people all over the country are doing walks and selling lemonade to get more money for scientists to fix diabetes.
  • “Oh. I want to give all my money to the scientists.” Luke has been saving for an entire year to buy a Playmobile Falcon Knight castle, and his piggy bank is stuffed.
    Pause. “Well, half the money – I still want the castle.” Sanity restored.

BTBHero

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Congress Listens!

“You need a time out!” Luke said, as I snarled and stomped down stairs. He was right. I’d just gotten back from four days of glad-handing, schmoozing, and pitching T1 research funding in Washington DC, and I was exhausted and having a toddler-class melt down.

But it was so worth it. Every year, JDRF brings advocates to DC to lobby their state legislators  on one or two specific points, and it’s an antidote to cynicism. JDRF takes a couple days to bring the advocates together before turning them lose on the Hill, and these are all some extraordinary people. Some have lost children to T1, some immediate family, many live with it themselves, and all have harrowing stories – yet they positively radiate joy and enthusiasm. I wish there had been more time just to hear everyone’s stories and meet more bloggers in person. I briefly met Karen and Jeanne and hope to meet Moira, Hallie, and Kathy some other time.

There were glimpses of DC’s underbelly. One morning, as we waited in line to get into one of the Congressional buildings, we saw a lobbyist flap down the stairs past us, with his garish tie, trenchcoat, and all. He cackled, “Don’t bother going in – we got all the money, and there’s nothing left!” DC humor.

But we were there as volunteers, and staffers visibly softened when we explained we were there for children, siblings, parents, friends, or ourselves. Sympathy doesn’t always break down along party lines – often it’s a staffer’s or legislator’s personal connection that turns an office into a supporter. Not all legislative offices genuinely back continued research funding, but most find the “ROI” pretty compelling. One third of Medicare costs currently go to diabetes, and one out of three Americans born this year will develop diabetes. Most will develop Type 2, but Type 1 rates are doubling every 20 years, and the average age of diagnosis keeps dropping (Luke will soon be typical).

Last year, lobbying (from the ADA and the National Indian Health Board as well as JDRF) renewed the Special Diabetes Program, which provides $150 million annually for research. It has helped reverse retinopathy, stopped T1 from progressing in trials, funded smart insulin development, and moved the Artificial Pancreas closer to reality. All this will disappear unless Congress votes to renew the SPD this year (hint – you can help in minutes).

Friday, as we arrived, we heard that the FDA just approved Artificial Pancreas out-patient trials that will run till 2014. Thanks to the 100,000+ signatures JDRF gathered, and thanks to Congress urging the FDA to move ahead “expeditiously” with a framework for the trials, we’ve come to the point where someone like Sen. Shaheen’s granddaughter might get a real vacation from diabetes.

And my son won’t have to put me in time-out when I come home, exhausted but happy.

A few random images (thanks to Brendy, the other WA delegate, who helped me overcome my aversion to cameras!):

Brendy deep in the glamorous part of lobbying - writing notes in the crowded cafeteria

We brave the tunnels under the Hill

Latte = strong coffee + lightener?!

Some legislators are roughing it...

Diabetes is broken?

It’s 5am, pitch black outside, and I’m bumping around, getting ready to head to DC for JDRF’s Government Day – really an extended weekend of workshops, hobnobbing, and meeting legislators from our state to ask for their support. This year, the request is to renew the Special Diabetes Program, which sets aside $150 million/year for diabetes research, and $36 million for Washington state alone. I’m psyched to be going – it’s a great cause and wonderful to hang around other people with Type 1 in their lives.

Luke wakes up, snuffling with a cold, and I shepherd him back into bed. I say he’ll feel better in the morning, and that I’ll see him in a few days.

“Three days is a long, long time. I never see that many.”

“I know, Bud. But I’m going for an important reason” – I pause, trying to distill Government Day into three-year-old terms. “I’m going to ask some very important men and women for money to see if they can make diabetes go away.”

He stares at me blankly. Diabetes has been part of his existence longer than he’s been alive, now, and I’m not sure the concept of it going away makes any sense.

“Uh, I’m asking them for money to see if they can fix diabetes.”

This registers. “Diabetes is broken?” he asks incredulously. “You need to fix it?”

Wow. Didn’t see that one coming. My brain races – do I tell my kid he’s broken? That just a small part of his pancreas is broken (OK, his immune system wiring)? I cop out.

“Uh, get some sleep, and I’ll see you in a few days. I love you, Luke.”

“Bye, Mom. I love you, too.”

And the FDA’s heart grew three sizes that day…!

And what happened then…?

Well…in Who-ville they say

That the FDA’s small heart grew three sizes that day!

And the minute his heart didn’t feel quite so tight,

He whizzed with his load in the bright morning light!

He brought the T:slim, iBGStar, iPro2, and the Veo!

And he… HE HIMSELF…!

Gave AP draft guidance the OK-o!

No one’s getting these in their stockings yet, but the ice may be melting as approvals for new products and trials trickle through.

Jeffrey Brewer (JDRF) just posted a thank you to everyone who helped bring about the FDA’s Artificial Pancreas guidance approval (which covers requirements for in-home AP trials), and it’s quite the list: endocrinologists, diabetes organizations (AACE, ADA, AADE, Endocrine Society), Children’s Congress participants, Congressional members (see? – they did accomplish something this year!), grass-roots advocates, petition signers, and the T1D community in general. Likely that includes YOU. 🙂

JDRF’s still waiting to see how guidance requirements will really play out when trials get underway, but they’re “cautiously optimistic.” Joshua Levy and Amy Tendrich have great analyses.

As Suess would say – with everyone making a racket, the FDA heard loud and clear,

We are here! We are here! We are here! We are here!