So Southern at Heart

05/28/2026

Registration for Rare Across America 2026 is officially open! Meet with your Members of Congress virtually and at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story.

Meetings will take place from August 10 to 21, and registration closes on Friday, July 17. Make an impact in your community at

Register here: https://hubs.li/Q04gjLFM0

05/28/2026

We’re proud to share that the EveryLife Foundation has officially secured spots for the 2026 TCS New York City Marathon on November 1 and four incredible advocates will raise awareness, amplify voices, and carry the rare disease community across the finish line with them.

Building on the momentum of our inaugural team at the United Airlines NYC Half Marathon, our endurance program continues to grow, bringing our community together in new and meaningful ways to advance our mission.

In the weeks ahead, we'll introduce you to each of our team members, the moments that moved them, the people who inspired them, and why they chose to show up for the rare disease community in this way. Because this movement belongs to all of us.

Whether you're cheering from the sidelines, sharing a story, or advocating from wherever you are — every voice, every action, and every act of solidarity move this mission forward.

This is what community looks like. Showing up together. For all of us.

05/28/2026

The EveryLife Foundation is proud to be a part of the World Orphan Drug Congress USA 2026! From June 9-11 in Boston, MA, patient advocates, government officials, industry professionals, and many other stakeholders who are part of the development and promotion of access to life-saving therapies will gather at this substantial event.

Our Chief Mission Officer, Annie Kennedy, is featured in the keynote panel titled, “Building a Patient-Centered Framework for Rare Disease Drug Development.” The panelists will discuss how policymakers, regulators, patients, and industry can co-create strategies that incorporate patient insights into every stage of drug development.

The keynote will take place on Wednesday, June 10, at 9:10 AM ET.

Join the EveryLife Foundation and the 2,000+ attendees at this event for free with a guest pass. Use the following link to fill out the guest pass application form and secure your spot: https://hubs.li/Q04j6kvP0

To learn more about the World Orphan Drug Congress USA 2026, click the following link: https://hubs.li/Q04j6fTC0

05/28/2026

Almost a decade has passed since Michael Phelphs set the world alight on the Olympic stage – as he always did – at Rio 2016, when he took home the most medals of any athlete with five golds and one silver.

05/27/2026

Thankful for today. ✨💞

05/18/2026

05/10/2026

💞 | A Prayerful Thought for those who seek HOPE, Home and Happiness 🤗

Mother’s Day can hold both gratitude and grief.

Some mothers are celebrated with flowers and full tables.
Others sit quietly with memories, unanswered prayers, and love that was never fully seen.

Trust is built in the ordinary moments.
The rides. The sacrifices. The late nights. The worry no one noticed.
The kind of love that keeps showing up even when it hurts.

And sometimes the hardest part of motherhood is realizing love does not always return the way you imagined it would.

Not every child sees the weight their parents carried.
Not every family story is wrapped perfectly with understanding.

But grace…
Grace reminds us that forgiveness is not weakness.
It’s choosing peace over bitterness.
It’s praying anyway. Loving anyway. Hoping anyway.

Today, I’m thinking about the mothers who gave everything they had ✨when it went unseen.

And praying healing finds every family still learning how to truly show up for one another. 🤍

05/06/2026

What’s your Favorite Fight Song? 🎶

Life is Messy.
“We get into the habit of living before acquiring the habit of thinking.”

Up next, Mother’s Day Week!

Be a Kid at Heart!

Hey Pops! 👋 We all have those guardian angels to get us through.

I know what you would tell me on a morning like today!

Yes, WE can!

Show up! Be prepared. Let’s do this!

Today we celebrate the Teachers and Nurses! Thank you for having faith in us!

Today’s quote of the day comes from James Kuhn: “Rest isn’t what you do when you’ve failed. Rest is what allows you to keep going. It’s a reset—a strategic pause that protects your energy, clarity and ability to show up with intention.”

☀️✨🙏

Confidence and momentum don’t require a new title. They’re rebuilt through how you communicate and the actions you take during the transition. …

☀️✨🙏

Thank you for Celebrating with us!

The Tony and Dwight Evening Edition sealed the deal! Thank you ♥️🙏✨

Appreciation post to the Spoelker Family! You bring us joy ! Thank you!

✨💞

04/27/2026

Mark and Jeanne realized they would only have enough money to take one shot to save Ryan before he died.

They chose enzyme replacement therapy.

They chose hope.

Learn more and get your copy of Saving Ryan on https://impositivity.com