ONCE UPON A GENE - EPISODE 241

Chasing Glimmers - What's Glimmering with Katie Lloyd

Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare disease journey can be, but we also believe in the incredible power of connection, bravery and positivity. We'll share inspiring stories from the community, life lessons we've learned and explore how glimmers light our way forward. Let's chase those glimmers together!

EPISODE HIGHLIGHTS

Take a break

A break is important to transition away from difficult moments and help you to look back to where you were and where you are. A break and stepping away allows you to see all the wonderful things for what they are, but getting away isn't just taking a vacation or going somewhere. Small, frequent breaks can be really helpful too. Consider what's logistically possible and be realistic about how to take a break.

Small scale, big impact

Take a nap during the day, and if you can't, lay on a yoga mat and just rest. Distract your kids in a way that carves out time to exercise. Take off your shoes and socks and go outside. Get grounded with Mother Earth and be in nature. Using breathing exercises can help to calm your nervous system and allow you a moment to re-group. Tap into the network of those you trust to give you a break from caregiving.

The generous rare disease network

I became friends with someone in the US and she made a beautiful baby blanket for me. Shipping the blanket was going to be really expensive and my friend didn't know how to get it to me. Another friend of mine happened to be visiting the US and has since brought the blanket back with her to Switzerland for me. I'm so grateful for beautiful people doing wonderful things.

For the love of focaccia

In the last year, I've been making bread, trying to perfect focaccia. I nailed it the other day and I was so proud of myself. It was the crispiest, fluffiest, most beautiful focaccia I have ever made and I now I want to make it for everyone on my street.

LINKS & RESOURCES MENTIONED

Learn More and Register for Week in RARE (use code FRIENDOFEFFIE)

https://globalgenes.org/week-in-rare/

ONCE UPON A GENE - EPISODE 237 - Join Us for The Global Genes Week In Rare

https://effieparks.com/podcast/episode-237-week-in-rare-2024

Look Again: The Power of Noticing What Was Always There

https://www.amazon.com/Look-Again-Power-Noticing-Always/dp/1668008203

Tender

https://www.amazon.com/Tender/dp/1529331218

Do Walk: Navigate earth, mind and body

https://www.amazon.com/Do-Walk-Navigate-earth-body/dp/1907974962

Marco Polo

https://www.marcopolo.me/

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene

Instagram

https://www.instagram.com/onceuponagene.podcast/?hl=en

Built Ford Tough Facebook Group

https:

//www.facebook.com/groups/1877643259173346/