Met with Christine Wenzl and Cardiologist Dr. Jonathan Cramer from the Adult Congenital Heart Association to discuss the unique challenges faced by adult patients born with a heart defect. Thank you for your important work.
Last week, @SenatorDurbin met with ACHA on Capitol Hill to discuss building support for the Congenital Heart Futures Reauthorization Act (CHRFA) of 2024. This week, you can keep the momentum going by attending Wednesday’s webinar to learn more about CHRFA, what it means for the #CHD patient and provider communities, and how to advocate for its passage. Visit https://t.co/lpJt1yRhgh to learn more and register—we hope to see you there! #CHDAdvocacy #CHDAwareness #CHDCare4Life
If you receive devastating news that your child has a serious medical condition, you hope there’s treatment options for them. That's why I met with @ACHA_Heart to discuss legislative efforts to increase funding for research & education about congenital heart disease.
For every extra year on Medicaid, a child earns 0.5% more annually in adulthood, the CBO says. The implication? Medicaid is both cheaper and cutting it more expensive than thought.
Tax Cuts Don’t Pay For Themselves. A New Paper Says Medicaid Might.
https://t.co/UwjT1N31cy
@CrackedSidewlks I shared this picture FIL… he replied… Love it. I had a classic MU ND t shirt years ago. Kept it good a long time. Was a hand with MU on it choking a chicken with an ND logo. Long gone but maybe I can find a picture online. It would be 1982 ish vintage.
This week I spent a night in-patient for a pacemaker replacement and had someone give me a Uber Eats gift card. I can’t tell you how appreciated that simple kindness was and how much it went towards at improving my stay.
This Christmas I plan to buy 10 in-patient #CHD families and #achd patients dinner through Uber Eats gift card. If you’d like to nominate a family who you’d like to brighten their holiday season, please DM me with their details. #congenitalheartdisease#chdaware#1in100
@MendedHearts@MLH_CHD hosted >30 of its board members, leaders and staff in Albany, GA for its annual meeting, awards, and training. I facilitated an advocacy training for the orgs’ ACTION NETWORK. @curastrategies is excited to continue to help grow the program.
Mystery solved. Equipment fire. Will land in Baltimore nearly 4 hrs after scheduled arrival. I’m just glad I wasn’t one of the ones diverted to Pittsburgh. Ouch! https://t.co/0qSIkizqEd
People have asked me, “What’s the purpose of an ACHD registry?”
👇👇 @Leigh_KC does a great job explaining the vision and purpose of the @ACHD_CHI in her most recent HeartDialouges newsletter.
As a person born with a rare heart defect, I know the value of good and plentiful data—or, at least, the consequences of not having it. Read my piece on the @ACHD_CHI, a group collecting patient data to help improve care. https://t.co/EqrtGAvze5 #CHD#CHDAwareness
It was an incredible experience participating in an all-day workshop working towards building a roadmap to provide better maternal care research, care, and outcomes for women with ACHD. More to come!
Good morning! We’re here live at @JLABS at Washington, D.C. for the @PCORI CHD Maternal Outcomes Consortium Meeting. We’re going to live-tweeting throughout the day. I hope you’ll follow along!
We're on the Hill today with @Honor_The_Gift urging members of Congress to sign a letter addressing a recent billing article limiting Medicare patients' access to non-invasive tests for organ rejection in transplant patients. Learn more here: https://t.co/POFNnhbCJh
New Medicare guidance on the coverage of post-transplant tests has led health providers to cancel orders and left patients in the lurch. https://t.co/aZmwxvJ5ko
ACHA staff and volunteer leadership were back on Capitol Hill this week meeting with Senate and House offices regarding workforce legislation impacting the ACHD community. #chdadvocacy#chdawareness#achalive#chdworkforce
Today’s Hill advocacy was personal. We had great conversations with 8 House and Senate offices advocating for ACHD/CHD research and care. Thank you @ACHA_Heart for entrusting CURA as your advocate!
CURA is proud to partner with the Adult Congenital Heart Association to raise awareness about the critical workforce shortages affecting the ACHD-certified provider community. Today, we were on Capitol Hill working to educate congressional staff on this important issue.
We are so excited to share that CURA has won @Provoke_News Boutique Agency of the Year award! It has been a great evening in NYC at the award ceremony! This wouldn't be possible without all of our great clients! #SABREAwardsNA#SABREAwards