“The ache for home lives in all of us, the safe place where we can go as we are and not be questioned.”
– Maya Angelo
The need for community is something baked into all us, literally woven into our most basic needs. When we look at patient and caregiver support, that need becomes even more apparent. A life altering and sometimes scary health diagnosis is so destabilizing. And a really great way to cope, find support, and live in the new normal is to get connected.
In my work at Leapcure, I really love the many conversations I get to have with advocacy leaders. This is such a normal part of my day, I tend to forget it’s not something every patient or every caregiver considers in their journey.
Last year, my mom was the main caregiver to my beloved aunt, or as we called her, Titi (Auntie in Spanish), who was battling Multiple Myeloma. Before my aunt’s passing in December 2021, my mom would often call me asking for guidance or venting about the struggle to make so many decisions in a world she knew little about. There were so many appointments, care options, and a whole set of new medical terms to learn.
I saw how necessary a community for my mom would be to provide both practical and emotional support. It hadn’t really occurred to her to even find a group, especially since this was such a different world to us all. And to my mom, there wasn’t really one big event that triggered the need to seek out support but rather a gradual influx of decisions that began to pick up the pace everyday.
According to a 2017 survey conducted of patients with rare diseases, roughly half of the participants said they weren’t working with an advocacy group because they just didn’t know of any that worked for them.
What I love most about my work at Leapcure is seeing up close how diligent and passionate advocacy group leaders are. I’ve spoken to folks who are working to be made known and available to patients and caregivers, lowering the number of people who are out there, not sure of where to turn while managing a condition that they may not know a lot about.
My Titi loved community and togetherness and lived a life dedicated to making people feel welcome, loved, and seen. My work at Leapcure is about advocacy, yes, but it’s also a way I can carry on my aunt’s legacy of creating a space for support of others.
If you’re looking for an advocacy group or lead a group, I’d love to talk! Feel free to reach out to me at Rebekah@leapcure.com