RARE Daily

Rare Leader: Clinton Moore, President, Cystinosis Research Network

June 25, 2020

The Basics
Name: Clinton Moore

Title: President

Organization: Cystinosis Research Network

Social Media Links:

Disease focus: Cystinosis is a rare, genetic, metabolic, lysosomal storage disease that causes an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas and brain. The cystine accumulation causes widespread tissue and organ damage. Cystine accumulation can lead to kidney failure, muscle wasting, swallowing difficulty, diabetes, hypothyroidism, cerebral atrophy, photophobia, blindness, corneal ulceration, ventilatory impairment, and more. Without treatment, children with cystinosis will usually develop end stage kidney failure and die prematurely. Cystinosis affects an estimated 2,000 people worldwide with just over 600 of those diagnosed living in the United States.

Headquarters: Lake Forest, Illinois

How did you become involved in rare disease: My son was diagnosed with cystinosis when he was 10 months old. I did nothing other than care for him and hide from the disease for the first eight years after diagnosis. Then, I finally attended a family conference at the Cystinosis Research Network [CRN]. The CRN held a family conference near where I live in Washington, D.C., which is only two hours away. I attended that conference, which was my first time ever meeting any other families or cystinosis patients. Once I left that conference, I felt inspired to become more involved. I started with various small-scale fundraisers. Then they slowly progressed into large-scale fundraisers. Eventually, the CRN reached out and said, “Would you be interested in joining the board?” and I accepted. Eventually I moved up to a vice president role, taking on family support, and a year and a half later they asked me to be president. So that’s an abbreviated reason why I got involved, but the main reason is because my son was diagnosed.

Previous career: Continue to work as a self-employed masonry contractor.

Education: High school graduate

The Organization
Organization’s mandate: Our mission is to celebrate the discovery of a cure, the development of improved treatments, and to enhance the quality of life for all our patients and their families.

Organization’s strategy: We constantly communicate with our community, whether it is with caregivers, patients, or whomever. We’re always looking for what the needs are in the community. And we use that as a foundation for what we, as an organization, work towards. What we find is we’re never doing needless efforts. We’re always trying to focus on the needs and the wants of the community.

Funding strategy: Our funding strategy is the combination of a couple of things we have. We have quite a few grassroots fundraisers, fundraisers by me and other board members, individual patients, or their families. They can vary anywhere from Facebook birthday fundraisers to bake sales and fancier upscale galas. But we also lean on industry partners for funding, a lot of times they sponsor certain projects that we have going on, or conferences, or whatnot. Pharma’s always been interested in, and helped us financially.

What’s changing at your organization in the next year: I would say not a lot really. Our goals have always been to continue as we are and help the community in any way that we can. Other than board members, which we do once a year in July, I would say not a lot really. We’re going to release a call for proposals. Depending on the response we get from that, we may change some of our focus towards funding those projects.

Management Style
Management philosophy: We’re very patient and family led. We are incredibly goal oriented. We’re fortunate to have a lot of volunteers, both within the organization as board members and outside the organization from patients and caregivers. That’s a big help to have those volunteers give us their time and give us their thoughts and their feedback.

Guiding principles for running an effective organization: I would say it’s honesty, ethics, and transparency, with a big focus on transparency. If you’re not running an honest, transparent organization, then maybe you shouldn’t be running an organization at all. We have a great group of supporters, from the research to industry, with whom we always have a huge amount of communication. We always try to forward those discussions to our community so that the community knows everything that we’re doing.

Best way to keep your organization relevant: I would say stay in connection with your community. Talk to them and listen to them. Try to find common ground on what the community needs or wants. To stay relevant, you need to be working toward a goal that the community needs or wants. If you don’t know what those needs and wants are, then you’re just running an organization to suit yourself and not an entire community.

Why people like working with you: I would say there’s a lot of people who do like working with me and there’s a lot who don’t. The reason that they do is because I am a very honest person and very down to earth, and very blunt. I don’t sugar coat anything. I’m just telling you how it is. A lot of people find that a strength.

Upon birth, you run a million things through your mind that you want to teach your child and different things that you want to instill in their brain, so they become good, respectful adults. I had all these thoughts, but once my son got diagnosed and got a little bit older, I found that he turned the tables on me, and he actually started teaching me how to be a human being. I would say he is my biggest mentor.

On the Job
What inspires you: Watching patients, families, and caregivers thrive and overcome obstacles that they’re dealing with. Cystinosis is a complicated disease that affects a million different things in a million different ways, but the community always pulls together and helps. Seeing that, whether I’m a part of it or not, has always been an inspiration to me. Watching them problem solve, come together, work together, and support each other has always been a big inspiration for me.

What makes you hopeful: We have a lot of research that’s very hopeful and possibly a cure for cystinosis down the road. There are a lot of treatments that are being studied at the moment. Those are all things that may make me hopeful for the future of cystinosis patients.

Best organization decision: I wasn’t around when this happened. My son wasn’t even diagnosed when this happened, but the fact that they came together at a kitchen table and created the organization during a time when there were no cystinosis advocacy groups in existence.

Hardest lesson learned: It doesn’t matter how hard you work or how great a job you think you do.  There will always be people who can still find something wrong with what you do, even though you’re doing your best and trying hard to please everyone. No matter how hard you try, you’re not going to satisfy everyone, but you just have to push forward, even when you’re getting criticized for what you’re doing. That’s been a tough one for me since the beginning.

Toughest organization decision: I think a lot of the toughest ones were made back before I got involved, like partnering with industry or with other advocacy groups, but all that was done before I came along. I’m sure they were very tough decisions. When you start partnering with industry it gives a different look to your organization. It was the right decision then and I still think it is now.

Biggest missed opportunity: This one’s got me stumped. We get a lot of opportunities, whether from researchers or from industry partners, to become involved in this or that project. Any project that we feel would be beneficial to our community, we support. We’ll gladly put our logo and name on it and help them create it or help them pull together participants or whatever it is that they’re needing. But I can’t say that we’ve missed any big opportunities.

Like best about the job: Being engaged with the patients and seeing them react and actually end up with a better quality of life due to the hard work and dedication that my board members put in. Seeing them thrive and have a better quality of life is priceless. That would be, by far, my favorite part.

Like least about the job: In my first month of becoming president of this organization, there was a shortage of one of our FDA approved drugs. Your phone doesn’t stop ringing. Everybody in the community thinks that you can fix every single problem that comes along. I don’t have any control, or any say, over the manufacturing of drugs and the overall way that a pharmaceutical company runs. But a lot of the times the community calls me and says, “Hey, I need this drug.” I can make some phone calls for you, but I can’t fix every problem. It’s frustrating because I wish that I could. That’s my least favorite part when it’s one of the community who calls and I can’t fix the problem that they have.

Pet peeve: It would be unresponsiveness. If I shoot an email and don’t get a response for a week, I get frustrated. If I shoot a text message to somebody that just texted me 30 seconds before, and then they don’t respond to me for a day-and-a-half, I just get frustrated.

First choice for a new career: I would love to stay in advocacy, whether it be for cystinosis, or for just rare diseases in general. I’m in contact with so many rare disease patients from all different rare diseases. We all become great friends after a while. I watched them working for the greater good of either a specific rare disease or rare diseases in general. I’ve always been a little bit envious wishing that I could do the same thing. I’m stuck making all my money with my back and my sweat of my brain.

Personal Taste
Most influential book: Chasing My Cure: A Doctor’s Race to Turn Hope into Action by David Fajgenbaum. He spoke at one of our family conferences and he gave me a copy of his book. That was a very good read. However, I’m more of an article reader than a book reader. I look for articles on any rare disease, or drug development articles, and read a lot of blog posts.

Favorite movie: The Hunger Games series and The Maze Runner

Favorite music
: I can listen to anything. When I’m on a job and turn on a radio, I turn on classic rock.

Favorite food: Philadelphia cheese steaks. Pat’s and Genos are equally fantastic.

Guilty pleasure: Sit and read blogs and try to further my education about rare disease.

Favorite way to spend free time: I like to be outside. I’d rather walk through the woods than anywhere else. We have some local state parks that I like to visit. They have some great nature trails and I go fishing, hiking, and walking. I do a lot of hunting in the fall and winter. When I was a teenager, my grandfather was a woodworker. He would go to the lumber yard and buy chunks of wood that really looked like nothing, and he would turn them into beautiful works of art. He taught me a lot about how to do those things. We used to work together all through my teenage years. When he passed away, I walked away from it. Over the last four or five months, I’ve been spending a lot of time out there in his old wood shop. I cleaned it up, got it organized, and replaced a lot of tools. I’m going to start that hobby back up again.

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