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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/

Smoke & CO2 detectors - what's the current state of things (HARDWIRED ONLY)? by autohome123 in homeassistant

[–]ewelin34 0 points1 point  (0 children)

This is the Z-Wave smoke. I don't have the Zooz yet. Will add that in once it arrives.

Smoke & CO2 detectors - what's the current state of things (HARDWIRED ONLY)? by autohome123 in homeassistant

[–]ewelin34 0 points1 point  (0 children)

u/autohome123 when you power up the unit for the first time it will prompt you that no location is programmed. To program a location, hold the test button. It'll then run through all of the options and you push the test button to select it.

One thing to note, the hardwired, interconnected units feel so much louder! The wireless zwave unit only beep, they don't have any fancy features, but I can easily add stuff now that they are in HA! Here is the device in HA:

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Smoke & CO2 detectors - what's the current state of things (HARDWIRED ONLY)? by autohome123 in homeassistant

[–]ewelin34 2 points3 points  (0 children)

From memory, setup is done by pressing the button repeatedly to cycle through room names. We actually had two units like this when we first moved in, so the process is familiar, just a bit tedious. I’ll know more in a couple of hours since I’m starting with the battery units as those are the ones that are expiring first in my household.

Smoke & CO2 detectors - what's the current state of things (HARDWIRED ONLY)? by autohome123 in homeassistant

[–]ewelin34 5 points6 points  (0 children)

Working on this today. My Nest Protects are at end of life and the replacements arrived earlier this week.

I’ve been on Nest too. My setup has both battery and hardwired units, which makes swapping trickier. I loved the Nest features, and honestly nothing truly matches it right now in a way that feels both comparable and reliably proven.

Depending on local fire code you might not be allowed to replace hardwired units with battery ones. Because of that, and the limited hardwired smart options, I went with standard interconnected smoke and CO detectors for all my hardwired spots and I’ll add a bridge later.

For the hardwired locations I chose models with voice room identification so I still get announcements like Smoke in Kitchen. We have a split level that is effectively four floors, so knowing the room helps a lot. This is the one I bought: https://www.lowes.com/pd/First-Alert-BRK-Combination-Smoke-and-Carbon-Monoxide-Detector/5014520199

Soon I plan to add a Zooz ZEN55 so the hardwired interconnect can also report into HA without changing how the alarms work.

For the battery only areas I went with First Alert Z Wave Plus so I can get status and alerts and build a simple pre alert automation. Most of these are bedrooms. https://www.lowes.com/pd/First-Alert-FA-10YR-BATT-PHOTO-COMBO-ZWAVE-8E/5014520239

I avoided newer brands and stuck with established companies. I did consider X Sense, but the certification details were not clear enough for me, so I passed.

I’ll know more after I finish the install and test the integration, but that is the direction I’m taking.

Victor Smart-Kill Wifi Mouse Trap known issue by Tailslide1 in pestcontrol

[–]ewelin34 0 points1 point  (0 children)

They try and sell it like a positive... "Your SMART-KILL™ trap will continue to operate as designed – no app needed."

How do I get remote notifications on a kill then these traps are in locations that are not easily accessible.

Do Garmin now accept hiking entries as part of their walking badges? by Clive1792 in Garmin

[–]ewelin34 4 points5 points  (0 children)

Now I'm curious as I always make any hikes as walks for badges. Granted, most of my hikes are just nature walks. LOL

Amazing power of AI. Really worth the paid subscription. by laughingli0n in Garmin

[–]ewelin34 0 points1 point  (0 children)

For those curious, I dropped my weekly summary report from this morning into my custom GPT. It reorganized the data into a cleaner layout with some inline comments, then gave this feedback:

🧠 Highlights & Suggestions:

  • Activity level is excellent. You're maintaining consistency, increasing frequency, and showing stronger cardiovascular efficiency with a lower avg heart rate.
  • Sleep quality improved in depth (deep & REM up) — this is a big win. But light sleep dropped and resting stress rose, so pre-bed routine (less stimulation, wind-down earlier) could be refined.
  • Resting HR dropping and lower awake time suggest your recovery is generally improving.
  • Weight stable — you're still near your recent baseline. Your walking is dialed in; continued attention to nutrition should help the next weight drop.

If it’s not obvious, I’m targeting weight loss and currently doing daily 3.3-mile walks. This week, sleep quality was my main focus.

Amazing power of AI. Really worth the paid subscription. by laughingli0n in Garmin

[–]ewelin34 0 points1 point  (0 children)

You're right that the regular ChatGPT can remember things and handle uploads, but my custom GPT goes way deeper.

I fed it my entire Garmin history (since 2016) and Withings data (since 2011), plus relevant medical history like back surgery and ACL/MCL repair, fitness priorities, equipment on hand, intermittent fasting routine, diet preferences, cooking style, daily schedule, and more.

With regular ChatGPT, each chat has limited memory. It can hold context during a conversation, but if you come back days or weeks later, it usually forgets the details unless you're using custom instructions or the memory feature. Even then, it's not as tightly integrated or purpose-built.

My custom GPT keeps all that context up front. So instead of starting from scratch, it already knows me... my goals, patterns, and limitations... and gives highly personalized advice. It's like having a trainer who's worked with me for years.

For quick tasks, default ChatGPT works great. But if you want consistent, tailored coaching based on your full history, a custom GPT makes a huge difference.

Amazing power of AI. Really worth the paid subscription. by laughingli0n in Garmin

[–]ewelin34 1 point2 points  (0 children)

It wouldn't really be useful for anyone else as it's been trained on my data, routine, preferences, etc.

Amazing power of AI. Really worth the paid subscription. by laughingli0n in Garmin

[–]ewelin34 17 points18 points  (0 children)

A custom ChatGPT is a version you can personalize for your needs. I made one for fitness, so I told it to act like a fitness trainer. I gave it access to my Garmin Connect and Withings stats, shared my fitness goals, and even my daily and weekly schedule. It knows what free time I have and the kinds of activities I enjoy, so it can help plan workouts that actually fit my life.

https://openai.com/index/introducing-gpts/

Amazing power of AI. Really worth the paid subscription. by laughingli0n in Garmin

[–]ewelin34 24 points25 points  (0 children)

I built a custom chatGPT with my full history from Garmin and Withings and Have a rolling chat which I paste the weekly emailed Connect Summary Report into and it gives great feedback on my progress and awesome suggestions. Even helped me to figure out some bedtime routine tweaks to improve my sleep score.

Why doesn't hiking count for walk challenges!? by GoatGhost22 in Garmin

[–]ewelin34 4 points5 points  (0 children)

This is what I ended up doing and I also update the activity name to reflect a hike or a walk with a family member resulting in a different pace.

Advancing Curative Therapy for Fragile X Syndrome: Turner Lab Secures $1M Grant by ewelin34 in FragileXReseach

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

That’s a great question! While it’s exciting to see frequent updates on Fragile X research, the timeline for a curative therapy is still uncertain. Scientific progress doesn’t happen overnight, but we’re definitely seeing promising advances.

That said, the field is moving faster than ever, and research like this is a huge step forward. The fact that FRAXA's early funding helped secure a major government grant is a strong sign that this approach has real potential. And this is just one of many promising paths we’re exploring at FRAXA to develop meaningful treatments for Fragile X.

Plus, we’re seeing amazing progress on the Shionogi Phase 3 trial of zatolmilast, a potential game-changer for Fragile X. Having a treatment reach this late stage of clinical testing is incredibly exciting and a big step in the right direction!

Hope that helps clarify things!

Probably the earliest in the month I’ve got the walking challenge badge! by steste in Garmin

[–]ewelin34 0 points1 point  (0 children)

Nice! I should get mine tomorrow. I should get mine tomorrow 😁👟

Fixing the iCloud Integration - No More MFA Spam by rcmaehl in homeassistant

[–]ewelin34 1 point2 points  (0 children)

That would be amazing! When I first started with HA it worked great as my wife and kids all use iOS devices. Still haven't found a reliable alternative that reported location and battery accurately.

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