u/Petep23

Hi friends!

I wanted to share something here because this community has meant a lot to me over the years.

I recently had the chance to sit down with Meet the Press and talk openly about what it's actually like to be an adult living with cystic fibrosis. The parts that don't usually get airtime. The waiting rooms. The fight for coverage. The quiet weight of planning a future we were told not to plan for.

For a long time, adults with CF have been the unseen generation. We grew up not expecting to be here. And here we are. Building lives. Raising kids. Showing up for each other.

I just wanted you all to see it. Not because of me. Because of us.

http://youtube.com/watch?v=zvbJdoLMMuE.&feature=youtu.be

And to this beautiful community, if you have ideas, please please reach out. I want to hear them. We move further when we move together.

Thank you for being part of this. You matter more than you know.

Pete

Hi guys!

My name is Pete. 41, born and raised in Indiana, now in North Carolina. CF since I was diagnosed at 8 months. When I was 13 my doctors told me I probably wouldn't make it past 18 and I shouldn't expect to have kids. I have three. We went the CBAVD plus IVF route, and now there are three small humans in my house breaking everything I own.

I'm also the founder of the Filotimo Foundation. "Filotimo" is a Greek word, that roughly translates to "helping someone and expecting nothing in return" which is what my family raised me on. The foundation exists because medicine caught up with CF and the support system for adults around it did not. We help adults with CF with two things: hardship (rent, copay, meds, when the system is failing you in real time) and family building (IVF, fertility, adoption costs). That's it. Real support, real fast, no red tape theater.

I'm posting here because I've been a lurker too long and the people I most want to help are already in this sub, asking questions I have answers to. I am not here to fundraise (donor stuff happens on the foundation's own channels, not yours). I am here to listen and help.

If you have CF, or you love someone who does, and you're trying to figure out fertility, copay, hardship, adoption, or just what life as an adult with this thing looks like, DM me anytime. Comment here, DM, whatever works. If Filotimo can help, great. If we can't, we usually know who can.

Moderators- if this breaks any rules let me know and I'll edit or delete.

Pete