Cystic Fibrosis Awareness Month: Meet Tiffany Remington

Last year, we were honored to be a part of “The Greatest Wedding Ever Donated” where Tiffany and Caleb Remington held a gala and benefit concert instead of a traditional wedding. Their mission was, and still is, to raise awareness and funds for causes they are passionate about, including Cystic Fibrosis. A year later, we are proud to continue to be a part of that movement, and help spread the word about incredible people like Caleb and Tiffany, and organizations like Global Genes that work tirelessly to fund research, support, and awareness for rare diseases.

For those who may not know, May is known as Cystic Fibrosis Awareness Month. To help provide education about this disease, we asked Tiffany to write a guest blog about her personal experience with Cystic Fibrosis. Learn more about Tiffany and Caleb’s touching wedding last year, and what this inspiring couple has been doing to continue their mission.

About Us

Caleb, my husband, was told he wasn’t supposed to live past 19 and I, Tiffany, selfishly, almost chose that to be my own fate.

Caleb was diagnosed with Cystic Fibrosis, a genetic condition that builds up sticky mucus in his lungs and other major organs in his body. He does around 2 hours of treatments a day and takes over 45 pills daily. He can’t breathe the same amount of air that you and I can, yet he continues to thrive in life by following his passions with no expectations.

I am a first generation Asian American that lives with chronic depression, anxiety, and childhood PTSD. While the cards I was dealt should never be given to any human, let alone a child, I was fortunate that I had mentors in my life to help me identify my strength that was tangled up in the pain and use it to my advantage.

Entering a relationship with someone who has a terminal illness – it is scary, but then I thought, it’s far more worth it to spend 10 quality years filled with adventure, challenges and growth than 50 years of a stagnant flow. I thought to myself, “I’m taking the plunge.” It’s worth it.

The Greatest Wedding Ever Donated

Our love has always been inspired by the gift of community and the compassion we received in some of our life’s most trying times. We knew the moment we got engaged, back in 2016, that we wanted to do something with our wedding that gave back to those who have given to us and kept us both alive.

We came up with the idea of turning our wedding into a charity gala and benefit concert to support causes that we are personally tied to: mental health, rare disease, research, low-income families, and education.

The event took place in Los Angeles at The Wiltern Theater where we were joined by family, friends, and strangers aka “wedding crashers” passionate to make a difference. The ticketed event kicked-off with an intimate wedding ceremony complete with ONEHOPE wine, and seamlessly transitioned into a Gala where Caleb and I hosted a “talk show” style evening inviting celebrities, social influencers, and NGO executives to talk about the different cause areas. We filled each segment with live performances and visuals to have our audiences connect with these issues on a deeper level. We ended the night with a live concert, dancing, and a bride and groom crowd surf.

About Global Genes

Of the five nonprofits that we chose, one of them was Global Genes — a nonprofit (and partner of ONEHOPE) that provides advocacy and resources to the rare disease community. Did you know there are over 7,000 rare diseases? In the US, a condition is considered rare if it affects under 200,000 people. What makes this organization so incredibly special is that it has become the voice, platform, and mentor to the lives that are often medically forgotten. They give those who feel isolated value and hope. Working with Global Genes for the past three plus years, we experienced the impact they made not only within the Cystic Fibrosis community, but with hundreds of others. It also allowed us to connect with other chronic warriors and learn how they manage their day-to-day.

These organizations, Global Genes and the four others, moved our audience to tears and their feet, and in the end closed the evening at $207,000 donated. The entire fundraiser was made possible by this incredible community.

What We’ve Been Up to

Since then, outside of working with CBS Studios as patient advocates and campaign coordinators for the film “Five Feet Apart,” a movie about two cystic fibrosis patients who form a romantic connection in the hospital, Caleb and I allowed ourselves to transition back into normalcy and refuel from two years of planning and execution.

We have been working behind-the-scenes to lay the foundation and framework for our next project: our organization. Our mission is to create opportunities for socially conscious couples and the wedding community to give back to those serving rare disease, mental health, and underrepresented communities.

For this May’s Cystic Fibrosis Awareness Month, we have created a social calendar of giveaways with partnered brands who have products or services that can have a positive impact in a CF patient’s life. We are excited to continue the conversation and forwarding the needle in finding a cure.

-Tiffany Remington

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