RARE Daily

Rare Leader: Robyn De Leon, Executive Director, Connecting Families UCD Foundation

July 25, 2019

The Basics
Name: Robyn De Leon

Title: Founder and executive director

Organization: Connecting Families Urea Cycle Disorder Foundation

Social Media Links:

Disease focus:  Urea cycle disorders (UCDs) are a group of inborn errors of metabolism affecting the detoxification of nitrogen.

Headquarters: Murrieta, California

How did you become involved in rare disease: I’d given birth to my fourth child and he seemed perfectly fine. Three days after he was born, he died, and nobody knew what was going on. After an autopsy, they asked if they could send his liver to Baylor and we said “Yes.” DNA studies came back that I was a carrier of OTC, a rare urea cycle disorder and that’s what my son had passed away from. I had my other children tested and they were fine. A few years later I had another child and he was fine. Then I had another baby and I did have an amniocentesis done on him and found out that he was also affected. He was put on a liver transplant list right after he was born and did receive his transplant. Unfortunately, we lost him seven weeks after his transplant. He was four-and-a-half months old. I had another child, a daughter, and she also has OTC like me. When I lost the boys, it was just, a very dark, lonely time for myself and my husband. We didn’t know anybody. We’d never heard of this. And we were just trying to Google things to learn more about it. I came across someone else on Facebook about 10 years ago. We actually started a Facebook group for talking, venting, and sharing what we’re going through. It just grew and grew. Now we’re almost 700 people in our group. We decided we should start a foundation.

Previous career: I was working as a parent-educator with special needs kids in my school district and I coached softball and volleyball for Special Olympics. 

Education: High school graduate and some college courses

The Organization
Organization’s mission: Our mission is to connect people, you know, empower them, and reach all the UCD families across the globe. That’s what we do. Our foundation isn’t about research. There is another foundation that focuses on that, which is a great cause and we need that.

Organization’s strategy: What we like to do is hold several small meetings throughout the year. That way the families can connect with one another and get to know one another. We also hold a family camp once a year for our UCD families and that’s free of charge. It’s not just for the kids. It’s for the parents and for the siblings too. It’s very important that these siblings get to participate in these camps because they’re struggling too with their brother and sister that’s sick. You are so focused on your sick child that your other children are sometimes in the background and you are not thinking about what they are going through. They can connect with the other kids and share what they are going through.

Funding strategy: We do different kinds of fundraisers. We get donations, sponsors, and Facebook fundraisers. We are going to do our first 5K this month.

What’s changing at your organization in the next year: We are adding more board members on the medical advisory board and more volunteers. And we’re planning more fundraisers and more programs. We have a life-enrichment program that we help our families with, as we help our families that want to go back to school, take a class, or something like that.

Management Style
Management philosophy: We look for people who are highly motivated and passionate and look at their strengths for where they are most fit to help us.

Guiding principles for running an effective organization: Tapping into the needs of the community and letting that be your passion, enthusiasm, and your motivation to keep going. It’s easy to get discouraged and easy to get off track.

Best way to keep your organization relevant: Getting the word out, regularly posting to social media, staying in contact with people, and making sure people are seeing you and hearing you. People have a short memory. The longer you stay quiet or don’t do anything, people will forget. You’ve got to keep pushing and keep on going, keep doing it.

Why people like working with you: Because we know firsthand what they are going through because we live it every day. I have it. My daughter has it. I lost two children to it. We are living it. We cry with them. We rejoice with them. We pray with them. We reach out them.

Mentor: My mentor is Global Genes. Global Genes took us by the hand and helped us form this foundation. Any time we are stuck, we call, and they are always there for us. Global Genes is our mentor.

On the Job
What inspires you: The families inspire me. Seeing that hope that they have. We are constantly telling them to hang in there. Seeing on someone’s face you made a change for the good. It’s one of those things that shines through. That’s the supercharge that we get.

What makes you hopeful: The families make me hopeful. They are why we do what we do. We’ve taken something so tragic and turned it into something good. We’ve learned that hope, when you give it to someone, you immediately get it back. It’s like a boomerang.

Best organization decision: The family camps. There are tons of meetings to go to, but the family camps have made a huge impact on the UCD community. They absolutely love it. The best decisions we make are the ones that get people looking forward to what we do next.

Hardest lesson learned: Try not to get discouraged. There are some days we feel overwhelmed. This is really hard. This isn’t what we thought it was going to be. There’s always somebody, always a negative person out there who has something to say.

Toughest organization decision: Some of the hardest decisions we make are ones where we have had to turn people away because we had a fixed number of slots and we were full up because of lack of funding.

Biggest missed opportunity: It’s always the thing you didn’t see until hindsight. I would imagine as we move further down the road that there will be missed opportunities that we didn’t see until we looked back.

Like best about the job: I love seeing the joy on people’s faces. That’s everything—seeing their faces light up when they meet someone like them. That’s the best part of the job, just bringing the families together.

Like least about the job: Knowing that there is still no cure for this. We get phone calls regularly about children who have passed away. We know exactly what they are feeling because we’ve been through that, but there is nothing you can say to make that better. That’s the hardest part.

Pet peeve: When other organizations talk badly about you. I can’t understand why there is so much friction between organizations that should be working together. There’s a lot of friction out there. We’re all supporting the same thing.

First choice for a new career: I always want to be doing something that is helping people.

Personal Taste
Most influential book: Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms by Ilana Jacqueline

Favorite movie: Brain on Fire and Miracles from Heaven

Favorite music: Country

Favorite food: Chips and salsa

Guilty pleasure: Brownies

Favorite way to spend free time: Relaxing, watching a movie, and window shopping

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