A big thank you to @berniemoreno office for listening to our stories regarding our Ohio children living with Cystic Fibrosis and affordable healthcare #CFAdvocacy
A big thank you to Rep. @michaelrulli office (specifically Gio) for listening to our story regarding our children with Cystic Fibrosis and affordable healthcare #CFAdvocacy - Gio we hope you make it to Spread Eagle Tavern!
Very excited to share our stories of those we love who fight Cystic Fibrosis as we represent #Ohio during #CFAdvocacy today in support of healthcare affordability
A big thank you to the team at @RepEmiliaSykes for meeting with Cohen (age 13) today during the @CF_Foundation Teen Advocacy Day. Cohen said โthey were extremely niceโ ๐ #CFAdvocacy
Love. Love. Love these Veterans Day dinners. Thank you @texasroadhouse for feeding us ๐ your staff was awesome and everyone was so gracious. #VeteransDay
We are a community that refuses to give up on a cure. ๐๐ โBreath From Saltโ author Bijal Trivedi receives the Jena Award from @MargCassalina#cysticfibrosis#cffvlc
โYou canโt have CF & not have insurance.โ - Shelby Luebbert, adult w/ #CysticFibrosis adult panel #CFFVLC Stories from each person & family that strives, sacrifices & risks health to maintain essential medical care emphasizes hurdles & society standards that have to be overcome.
From the start of our sonโs journey w/ #CysticFibrosis we have benefited from the incredible care principles @CF_Foundation established. He has received care at 3 care centers across the U.S. and another in Germany - the care principles have directly impacted his health. #CFFVLC
So much development has occurred since our son Cohen was born 12 years ago with Cystic Fibrosis. The idea of sitting through a @CF_Foundation session today to talk about the differences between gene editing & gene therapy is surreal. Truly HOPE in action. #CFFVLC
Thank you so much to the team at @SenSherrodBrown office. Big shout out to Diop for listening to us share our stories and thanking us for being willing to vulnerably share them to our representatives. What a beautiful and heartfelt meeting to end our day ๐#CFAdvocacy
It is important that people with Cystic Fibrosis remain apart to prevent spreading bacteria that could result in awful infections. When @CF_Foundation hosts events only one person with CF can attend in person. Cohen sent his โduckyโ to represent and boy did Ducky advocate.
Thank you @SenVancePress for the time today to share our stories. Ohio has a uniquely large population of people living with #CysticFibrosis as well as some of the TOP CF Care Centers in the nation. We are grateful for your time today! #cfadvocacy
Hundreds of advocates from the cystic fibrosis community are in Washington, D.C. today to ask their members of Congress to take action on two critically important issues for people with CF! Share your support by reposting this to help spread the word. #CFAdvocacy
Very excited for our opportunity to speak with our Congressional Representatives today regarding #CysticFibrosis ๐๐ #CFAdvocacy Thank you @CF_Foundation for coordinating this day!