Dawn Bailey
@doublejoybailey
Mom to a rare disease warrior, widow. Consultant working to improve complex health systems of care as Family/Patient Partner.
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EMSC worries about pediatric emergency capabilities so parents don’t have to. emscimprovement.center/impact/ #EMSCSavesLives
McKinsey fellows support expanding disability-inclusive healthcare access mck.co/43F0Vfc via @McKinsey
Excited to see so many Little Lobbyists families in Washington D.C. today! We’re sharing some of their stories on the front steps of the Capitol right now. Help us #ProtectMedicaid! LIVESTREAM: youtube.com/live/tBo00pL1w…
Want to know why the Governor is fighting to protect the integrity & sustainability of the PPCG program? Read this story. azcentral.com/story/news/pol…
"Saving this program for people with disabilities is the Number One issue facing the Legislature and the state right now, and we’re using every single tool at our disposal to deliver for some of the most vulnerable human beings in our state. It's our moral responsibility." -
Gov. Katie Hobbs pledges vetoes until lawmakers compromise on disability funding azcentral.com/story/news/pol… via @azcentral
The general public has to be aware that the GOP is calling for cuts to services to Arizona's children. How Pro Life of Rep. David Livingston!!! Spare me!!!!
Watch as House GOP Appropriations Chair David Livingston, under questioning from Democrats this week, says he hopes to make massive cuts to programs for developmentally disabled children (and other vital services that use federal funds). His reason: He expects Trump to cut aid to
I echo this statement @ElenaHung202 💗
“I have often said: there is not a single thing I would change about my daughter, but there are a million things I would change about this world so that it would be worthy of her.” — @ElenaHung202 The words still ringing in my ears after the #CareCantWait bus tour. We will win.
During the 2020 primary I had the privilege to direct an interview series with Ady Barkan & the presidential candidates for @BeaHero . If you never watched the Kamala episode, now would be a good time to do that. Most importantly (to me), she treated our @peoplesTV crew well.
The Pediatric Pandemic Network is launching a study opportunity for families called “Finding Information About Your Child’s Health.” See the flier for details.
Here's a look at the latest weather impacting California communities. #StayStormInformed #StaySafeCalifornia #CAwx
Taryn, Shelby and I were so grateful to attend to remember Ady and to see so many of the Be a Hero group in person. What a beautiful memorial and reminder of what we all can still do. 💗
Our heartfelt thanks to those who joined us for Ady’s memorial. Ady fought for what he believed in. Even as ALS paralyzed his body, he never gave up & neither will we.
"The wonderful care and support that [Ady] received made him even more determined that every American who needed it should have the same opportunities. And I know these are goals we'll keep fighting for as we think about how we can live up to the example that he set for us. We'll
![BeaHero's tweet image. "The wonderful care and support that [Ady] received made him even more determined that every American who needed it should have the same opportunities. And I know these are goals we'll keep fighting for as we think about how we can live up to the example that he set for us. We'll](https://pbs.twimg.com/media/GD2Jt25WoAArwqF.jpg)
Looking forward to attending tomorrow and the memorial on Sunday!
I’ll be in Santa Barbara tomorrow talking Not Going Quietly (@NotGoingQuiet) with: @Nick_Bruckman @AmandaR0ddy @BradleyWhitford ♥️
This!
Two things I learned from grief: you will be shocked by the people you love who can turn out to be the ones who hurt you the most in your grief AND you will be shocked by the unexpected generosity and care of others you expect the least from.
Hello New Yorkers! Folks are gathering in-person to watch the livestream of Ady’s memorial on Sunday, January 14th. Head to the link below to RSVP. eventbrite.com/e/remembering-…
eventbrite.com
Remembering Ady Barkan (NYC community livestream)
For all of us in NYC and nearby who would like to be in community to view the livestream of Ady's Santa Barbara, CA memorial on January 14.
Ady is gone, but his spirit and commitment to building a better world live on in those who continue his work. Ady loved and cherished the people who cared for him every day. Join us in honoring his memory by lifting up the videos of Ady and his caregivers, the people who made
Being able to know Ady, to be a part of the @BeaHero community, and to share our story was such an honor. Ady’s support and kindness for our family over the last 2+years meant so much. Our hearts are with Rachel, his beautiful children and family. May we continue his fight.
Ady’s life and activism touched millions of people. Now it’s our turn to show up for him. One thing you can do to help is make a donation to the GoFundMe set up by Ady’s close friends in support of his family. Can you help spread the word? gofundme.com/f/remembering-…
Grateful for the opportunity!!
@doublejoybailey speaks about personal preparedness when you have a child with medical complexity @AAPexperience See the daily care map - adding disaster planning to this is overwhelming. ✅ meet families where they are at ✅ partner with community programs
One in five children have a special health care need. Yet 85% of these children and families say the systems they rely on don’t function well. 1/3
Thinking about better times When missing you didn't include looking at photographs but taking them When talking to you didn't include journaling notes but texting you When hearing your voice wasn't playing back voicemails but calling you. #Grief sucks. #LifeAfterLoss
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