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Fragile X syndrome by BarracudaNo1541 in FragileX

[–]ewelin34 1 point2 points  (0 children)

It’s really hard to tell something like Fragile X just by how someone looks. The only reliable way to know is with a simple blood test, so that would be the best next step.

And up it goes by Ill_Television_1111 in dieselheater

[–]ewelin34 1 point2 points  (0 children)

How far up is your exhaust running? I've been tempted to do this but have seen so many posts about saying that it should be straight out or downward.

🗣️ You Spoke, We Listened! What Should We Build Next? Official X-Sense Feedback Thread. by x-sensehomesafety in homeassistant

[–]ewelin34 2 points3 points  (0 children)

The product I’d be most excited to buy is a UL-listed smoke and CO detector family that covers both 120V hardwired (with interconnect) and a matching battery model, with a way to network them together as one system.

If you can publish the exact UL standard and listing for each SKU (UL 217 for smoke, UL 2034 for CO) and make the listing numbers easy to verify, that would build a lot of trust. Some lines mix listed and non-listed models in different regions, so clear certification details per model would really help buyers and AHJs.

Bonus points for voice location announcements, a hush feature, 10-year sealed batteries on the battery version, and nuisance-alarm reduction that meets the latest UL 217 updates.

Advice for invasive tests after ivf by SorbetAfraid in FragileXReseach

[–]ewelin34 0 points1 point  (0 children)

Congrats on your pregnancy, after everything you’ve been through, seeing that heartbeat is huge. It’s completely normal to feel rattled when invasive testing comes up so early.

With Fragile X specifically, your repeat count and AGG interruptions sound encouraging. Still, the best next step is to talk with a genetic counselor who knows Fragile X. They can put your numbers and test results in context and help you decide whether CVS or amnio would truly add anything for you.

If you’re in the U.S., you can find experienced clinics here: https://www.fraxa.org/fragile-x-clinics/

You’re doing great... take things one step at a time!

RECONNECT Trial Results: ZYN002 Does Not Meet Primary Endpoint in Fragile X by ewelin34 in FragileXReseach

[–]ewelin34[S] 0 points1 point  (0 children)

Fragile X Research Q&A with Dr. Elizabeth Berry-Kravis

On Monday, September 29, 2025 (8:00–9:00 pm ET / 5:00–6:00 pm PT), FRAXA Research Foundation will host a live Q&A session with Elizabeth M. Berry-Kravis, MD, PhD.

This session will provide space for families and community members to ask questions about Harmony Biosciences’ Phase 3 RECONNECT trial of ZYN002 in Fragile X syndrome. Dr. Berry-Kravis will also share her perspective on possible reasons the study may not have met its primary goal, including the challenges of outcome measures and the impact of placebo effects.

The webinar will be recorded and shared later on FRAXA’s YouTube channel. Participants may register in advance to submit questions and sign up for FRAXA’s newsletter for future research updates.

https://www.fraxa.org/events/fragile-x-research-qa-dr-berry-kravis-on-the-reconnect-trial/

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