Name: Casey Gorman
Title: Executive director
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Disease focus: Smith-Magenis syndrome (SMS) is a rare neurobehavioral disorder characterized by a recognizable pattern of physical, behavioral, and developmental features. It is caused by particular genetic changes on chromosomal region 17p11.2, which contains the gene RAI1.
Headquarters: Sterling, Virginia
How did you become involved in rare disease: I started my career working in neurology research coordination at the Children’s Hospital of Philadelphia. At first, I was focusing on epilepsy clinical trial support, and over the years that segued into working with rare diseases, specifically with Rett syndrome and related neurodevelopmental disorders. I primarily worked with the Rett Natural History Study, as part of the Rare Disease Clinical Research Network. The investment of every group involved in that study was really inspiring to me—families, researchers, and the patient advocacy groups were all extremely committed to the project, which isn’t always the case in that kind of research. It was just really wonderful to see and be a part of. At that point in time, I was also working on my master’s in public administration. It seemed like the perfect fit for me to shift over from the academic side of research to patient advocacy. As I was starting to look around for positions, I found the role at PRISMS. They were looking to expand their research program and work on their patient registry, which they’d rolled out relatively recently. For me, it was a great intersection of where I’d already been working, what my experience was, with what PRISMS needed at that particular time. It’s been great to work with them and try to expand what we’ve been doing in research and getting to know the SMS community along the way.
Previous career: Clinical research coordinator
Education: Bachelor’s degree in behavioral neuroscience from Colgate University and a master’s degree in public administration, nonprofit/public/organizational management from Villanova University
Organization’s mission: Our mission is to provide information and support to families and individuals with Smith-Magenis syndrome, and we sponsor research and foster partnerships with professionals to increase the awareness and understanding of SMS.
Organization’s strategy: We focus on education—educating the members of our community (primarily caregivers and also professionals), so that they know more about SMS and how to support individuals with SMS. That includes behavioral professionals, clinicians, et cetera. There’s a lot of different professionals that an SMS caregiver and individual will encounter across their experience in healthcare, and we want to make sure that all of these people will know about Smith-Magenis syndrome and are educated about the syndrome and can treat our families and SMS individuals with the care and respect that they deserve. We also make sure to promote our education through awareness campaigns that we run across the year. Our next one’s coming up for SMS Awareness Day, which is November 17th of every year.
Funding strategy: We rely a lot on our SMS community to host events and donate individually to PRISMS. We’re starting to focus more on getting peer to peer fundraising campaigns to make it easier for our community to share their fundraisers with friends and family. One of our main concerns as an organization is to make sure that the burden of funding our organization isn’t all on our rare disease community. We know that they’re already going through so much, and we don’t want it to also include funding PRISMS. We’re providing services for them, and although they’ve been very supportive in getting us this far, in the future we’re hoping to diversify and start to get more corporate sponsors and try to encourage participation from people outside of the SMS community.
What’s changing at your organization in the next year: Like everyone else, we’re excited to get back to hosting in-person events. We have our next in-person conference scheduled for August of 2022. It was originally scheduled for 2020 and got pushed back to 2021, then we decided earlier this year to push back to 2022. I’m excited to get to meet everyone. I started with PRISMS in 2019, so I haven’t had a chance to attend a conference and haven’t had a chance to meet a lot of the members of our community. I’m excited for that and I hope our community is too.
Management philosophy: I would say that I am fairly laissez faire. I’ve been fortunate to have lots of staff and volunteers that know what they’re doing, and I trust them to get the job done. We’re all professionals. If I trust you to get the job done and you trust me, we will be able to work better together than if I’m trying to micromanage people.
Guiding principles for running an effective organization: I try to have a good partnership with the board, especially the board president. I think that’s key, especially for a small nonprofit. I rely on my board for a lot. They’re our most engaged volunteers, and they are a working board. It’s important to me that we work together well.
Best way to keep your organization relevant: For me, it’s been a lot about networking. I’m making sure to involve myself with Global Genes, with NORD, and with executive director groups to know what’s going on and what’s hot in certain areas—not just in rare disease, but outside of rare disease, what’s going on in the nonprofit space. Network, network, network, and stay up to date about the latest trends.
Why people like working with you: I have a clear big picture and I’m generally optimistic that things will work out. That’s helpful when people start getting down in the weeds. I can stay positive and focused even when everyone else is focusing on the little details that are going wrong. I anchor myself in the big picture and can keep going with the vision.
Mentor: I’ve been fortunate to work with Robby Miller, the former executive director of the National Fragile X Foundation. He was part of the search team that brought me on at PRISMS and stayed on to work with me, as this is my first role as an executive director. He’s been wonderful, connecting with me with individuals at the National Fragile X Foundation to provide guidance around what to do in the rare disease space. They’re a bigger organization and farther along in their process, so it’s been great to be able to connect with them through him. We’ve been fortunate that he’s stuck around and is currently advising us and supporting our clinic and research consortium, which we launched last year. I don’t know where I’d be without him and his advice.
On the Job
What inspires you: For me, the SMS community is always inspiring. We have a very active Facebook support group and it’s wonderful to see day-to-day, all of the parents and caregivers in that group posting their little wins and trying to lift each other up when anyone is having a bad day. Knowing that that’s why I’m working and that’s what I’m working for has been wonderful and inspirational.
What makes you hopeful: For the Smith-Magenis syndrome community, we recently had a medication approved specifically for nighttime disturbances and SMS, Hetlioz. It was approved in December of 2020, and we’ve been participating in discussions with other patient advocacy groups about sleep and how other pharmaceutical companies could study sleep across multiple different diseases. Specifically, some of these have been basket trial discussions that we’re hoping to push forward. We’ve participated in a basket trial already for a genetic obesity medication. I am hopeful that these new approaches and clinical trials will continue to expand treatment options for rare diseases, not just Smith-Magenis syndrome, but any rare disease. Right now, it can be hard for the rarest of the rare diseases to get noticed by pharmaceutical companies. But if we can all work with the FDA to expand its horizons on what might be acceptable in trial design, it’d be helpful to get studies of multiple indications going. It’s the wave of the future. And personally, I’m very hopeful that that’s the direction we’re moving in.
Best organization decision: At PRISMS, the best thing that I’ve done so far is help launch our clinic and research consortium. This is a way for us to gather clinicians who are interested in Smith-Magenis syndrome so that they can share knowledge and best practices. Before this. we had an informal group of clinics that would meet on an almost monthly basis. We’ve spun that forward into being a more formal organization, which has made it easier to recruit new clinics and spread more knowledge about Smith-Magenis syndrome among professionals who may not have seen as many individuals with Smith-Magenis syndrome already. It’s going to be great for our community and will pay off for us all in the future.
Hardest lesson learned: I sometimes speak very directly and that can be difficult to navigate, especially in emails, in particular because I am a fairly young, female leader. Tone policing is an issue. I’m not sure if I’ve learned a lesson around it, I’ve just learned that it exists and to be cautious depending on who my audience is.
Toughest organization decision: Canceling our in-person conference this year. We made the decision to push it back again around February of this year. With vaccines starting to roll out, we weren’t sure if it was the right thing to do. Luckily, hindsight says we made the right decision based on how things are going right now, but then it was a bit of a nail-biter, and we were worried that the community might not take it well. Fortunately, we’ve all kind of taken it in stride. I think everyone was happy to stay on the side of caution. And I am really glad now that we made that decision.
Biggest missed opportunity: I haven’t been with PRISMS long enough to say. Right now, I would say we’re doing well, we’re doing what we need to do. I think there’s lots of stuff we haven’t been able to do because of size and funding, but I don’t think I can point to one opportunity that sticks out as missed.
Like best about the job: I enjoy being the main decision-maker, even though it can be stressful. It’s nice being number one.
Like least about the job: We’re a small nonprofit. There way too much to do, too little time, and not enough money.
Pet peeve: Unnecessary emails and tone policing.
First choice for a new career: I’d love to be a travel blogger/influencer (but not right now, for obvious reasons).
Most influential book: Drive: The Surprising Truth About What Motivates Us by Daniel H. Pink has helped inform a lot of my thinking about how to manage people, including myself.
Favorite movie: Lord of the Rings: The Two Towers—I haven’t watched it in a while, but it’s one of the few movies I do re-watch.
Favorite music: K-pop
Favorite food: Any noodle soup
Guilty pleasure: Any noodle soup
Favorite way to spend free time: I play ultimate frisbee competitively. I spend a lot of time doing that.