Filotimo Foundation

One of the more loving things you can do with someone you’re planning a life with? Carrier testing. 🧬

It’s Sexual Health Awareness Month, and knowledge is power. Let’s get into it.

A carrier has one copy of a gene mutation and one working copy. Carriers are almost always perfectly healthy, with no symptoms and no reason to suspect anything. About 1 in 31 Americans carries a cystic fibrosis mutation and most will never find out.

It becomes relevant when both partners carry a mutation, or when one partner has CF and the other is a carrier. Swipe for how the math actually works.

The screening itself is a blood draw or a cheek swab. Ask your OB-GYN, your primary care doctor, or a fertility clinic. Anyone can ask to see a genetic counselor. You don’t need a diagnosis or referral or a reason beyond “we’re thinking about kids and we’d like to know”

Knowing doesn’t make a decision for you. It means the decision is yours, made early, with time to plan: what to expect, what support you might want, which path to building a family is best for you.

Filotimo Foundation can help adults with cystic fibrosis by covering genetic testing and the family-building road that comes after it. If that’s you, the Get Help page is in our bio.

And, if it isn’t you, go anyway. Bring your person. Call it a date.

The Filotimo Foundation would like to shine a light on a truly generous and beautiful soul. 🩵🪽

Our beloved family member and friend, Nancy Hronopoulos, passed away last week. In lieu of flowers, Nancy requested that donations be made to the Filotimo Foundation in her memory.

We are eternally grateful for her incredible generosity and deeply moved that, even in her final days, she was thinking of ways to help others. That selflessness speaks so beautifully to the kind of person Nancy was and the legacy she leaves behind.

Nancy was deeply loved by so many and will be missed beyond words. 💙 We will forever carry her kindness, love, and generosity in our hearts.

Skylar showed up for all of us at our gala this spring. Now it's our turn. 💙

Tomorrow, Saturday, September 19, join Filotimo Foundation and Small Hands Big Hearts United for FLIP Up for Skylar, a disc golf tournament at Fortnight Brewing in Cary from 12–4 PM.

Every round played helps Skylar Jones, a 24-year-old living with cystic fibrosis, prepare for and recover from her double lung transplant.

Want in? A generous donor is covering four tickets for our community. Email us at [email protected] and we'll get you registered to compete — for FREE! First 4 people only, so don't wait.

Grab your disc, grab a friend, and let's flip up for Skylar. Register, donate, or learn about sponsorships: https://my.onecause.com/event/organizations/9b52bbdd-517e-40aa-aa9e-9b43d3e202c2/events/vevt:db853b85-b733-4b2c-a5be-f97e24bc61f3/preview/home/story?utm_campaign=feed&utm_medium=referral&utm_source=later-linkinbio

It’s all Greek to me. A series where we explain one thing without the jargon.

First up: CFTR modulators.

Cystic fibrosis is caused by a faulty protein. Modulators are medications that help that protein do its job. For a lot of people, they have been genuinely transformative - better lung function, fewer hospital admissions, a longer life than anyone had predicted.

Here's the part that gets left out. They don't work for everyone.

Eligibility depends on which genetic mutations you have, and some people with CF have mutations that no approved modulator treats. They watch a breakthrough happen to their community and not to them.

So when you hear that CF is "solved" - it isn't. It's solved for 90-95% of CFers. But the others are still here.

Got a question about this? Ask in the comments. That's what this series is for.

The United States Sexual Health, Reproduction, and Gender Research (SHARING) Working Group and international researchers are partnering on a global survey to discover what sexual and reproductive health research areas are most important to the CF community.

Click here to take the survey: https://redcap-std.hs.pitt.edu/redcap/surveys/?s=YHKMWNJXK4TNMFYX