Founding a Rare Disease Non-profit: The Importance of Advocate Self-care

As an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind are extremely tired. Because what choice do I have but to continue going? If I don't, chances are, no one else will pick up the pieces.

Founding a non-profit organization

In 2023, I founded the Raging Raymond Foundation, a non-profit organization that focuses on impacting the lives of families with children diagnosed with rare genetic disorders.

Raymond, my son, was my inspiration to start this foundation. His infectious smile and determination have brought joy to my life every day since he was born. I knew that I wanted to use our story to help others achieve milestones they once thought were never possible.

But it came with a lot of stress.

Keeping the organization running with little support

Whether your disease community is small or large, families are most likely experiencing different yet similar symptoms. Therefore, you can imagine the worry that most people deal with daily. In my experience in the rare community, it is extremely difficult to get continuous effort from other families, which often puts pressure on the organization's founder to keep things moving.

Advocates work tirelessly for the entire community. They would like help, but they don't ask because they don't want to add more to anyone's plate.

Why self-care matters

Self-care is important whether you feel burnt out or not. Those who love their job and work all hours of the day often struggle with the most fatigue. I know I am guilty of this myself.

It is truly not possible for one person to accomplish a hundred things every day, and I had to learn this the hard way. I woke up a month ago and felt like I was hit with a ton of bricks. I had to step back and prioritize myself, my needs, and my family.

Dedicate time for yourself every day

Whether this is 10 minutes or 2 hours, this is your time. Take a walk, take a bath, watch your favorite show or movie, call and talk to a friend or family member, or do something that brings you happiness.

Appreciate yourself

Know that because of you, other people's lives will be impacted in a positive way. You are doing more than most members of the community, and you deserve to recognize yourself for that.

Know that life will happen

Understand that life will happen, and whatever comes up is important too. Even the most passionate founders have to put things on pause to handle situations that come up in their lives.

Adapt to your surroundings

Regardless of what comes up, rearrange your schedule the best you can so you can handle what is around you and still do your job.  If it is not possible, that is okay. You come first. A temporary break won't do any harm.

Prioritize what needs to get done vs. what you want to do

Make a list of what you need to do in order of importance, write the deadline next to the task, and focus on this first. You can also make a "want to" list to keep track of other things you are working on achieving so they are not forgotten.

Set your daily work limit

As caregivers, we often aren't able to do shift work. We need to get creative with our schedules. For example, I work 6 hours a day, splitting the time between the non-profit and my writing job. You will often find me working before the kids get up, during my daughter's morning educational videos, and then again after the kids go to bed.

The bottom line

Slowing down is crucial for continued growth and success. It allows you to regroup your mind, think about new ways to promote your organization, and focus on ways to improve yourself.  

You will have your good and bad days, but with good self-care practice, you can achieve anything. Good luck!