RARE Daily

Rare Leader: Carrie Howell, Executive Director, Dup15q Alliance

April 7, 2022

The Basics
Carrie Howell

Title: Executive director

Organization: Dup15q Alliance

Social Media Links:

Disease focus: Dup15q Syndrome is characterized by having an extra copy of a portion of chromosome 15 in the 11.2 – 13.1 region in combination with a number of symptoms that may include, hypotonia, epilepsy, cognitive delay, motor delays, autism, and similar facial features. It is important to acknowledge that there is a wide range of severity in the developmental disabilities experienced by individuals with chromosome 15q11.2-13.1 duplication syndrome. Two individuals with the same dup15q chromosome pattern may be very different in terms of their abilities. Reviews of the scientific literature do not show an obvious correlation between the size of the duplication region and the severity of the symptoms.

Headquarters: Highland Park, Illinois

How did you become involved in rare disease: I had a passion for rare disease when I was working at the Hospitality House of Charlotte. I was working with a lot of organ transplant patients and cancer patients. That started my interest in the rare disease space. I would just meet so many people who were looking for a diagnosis and then three years later my husband was diagnosed with a neurological condition and it sealed the deal of how complicated it is to get diagnosed. Coupling that with my nonprofit background, it became a love for me. When I found Dup15q, I knew this was my “fit”.

Previous career: Nonprofit leadership and consulting

Education: B.A. in psychology from University of South Carolina, M.A. in counseling from Southeastern College, certificate in business essentials for nonprofit leaders from Wake Forest University, and also a Certified Fundraising Executive

The Organization
Organization’s mission: We provide advocacy, education, family support, and facilitate research for those living with dup15q syndrome.

Organization’s strategy: We listen to our community and then we look at the potential for moving the needle in therapeutics and try to make sure we’re being realistic on what we can accomplish.  Then we look at the potential in how we can raise the funds to support the strategic plan.

Funding strategy: Our families are our number one funding source. They are passionate, of course, about the impact they can make to change the trajectory for their child and they are driven to help create a better life for the next generation of those living with Dup15q syndrome. They’re passionate about us funding research. They’re passionate about us funding clinics. That fuels a lot of our fundraising. We are getting more and more interest from industry about dup15q syndrome and we are working on engaging them to become our partners when appropriate.  We also have started getting a few grants.  We do have some events scattered throughout the country led by our families.  Our families are fierce fundraisers.

What’s changing at your organization in the next year: We are trying to get 50-50 between research and family programming. Our previous executive director, Vanessa Vogel-Farley, had a very heavy background in research, and mine is heavily in the nonprofit side. We’re marrying those two well and she’s on our board now. We’re level setting and spending time on research and spending time on refocusing our programming. Our team has spent a lot of time surveying the community, doing one-on-one interviews with people in our community to see what their needs are. I’d say the third focus is on our clinics. We are working on trying to restructure the communication to our families about clinics. We’re also trying to get new clinics to join, but in the meantime, we want to make sure we’re getting the right education to clinics and building that next generation of Dup15q doctors.

Management Style
Management philosophy: I am a servant leader. I don’t ask my staff to do anything I wouldn’t do. I would say one of my greatest strengths is that I am an over-communicator. I like to make sure that no one on my team is surprised by things. I work hard to keep them in the loop about things I’m learning.  My hope is that my team knows I will dig in the trenches with them but also give them the autonomy to thrive in their role.  When we lose a duper, it weighs heavily on our team, since most have a child with Dup15q.   Modeling for the staff during those times is so important to say, I’m right there with you, especially the fact that I’m not a mom of a child with extra needs.

Guiding principles for running an effective organization: Having a strategy is crucial. Also, not being reactive is important.  For good reason, our community has a lot of ideas and we have to be strategic versus reactive because we are a very small team.  We wish so badly we could make every idea come to life, but we want to be thoughtful and move the needle on some key areas for our families, supporting programming and research/clinics being the key focus areas.  This can be so hard to do sometimes because with my nonprofit passion comes my “heart” for our families and I want to jump in and help everyone meet their needs, but I know our organization will not thrive if I do that.

Best way to keep your organization relevant: Being in front of industry to make sure they know about us. Making sure they see the reality of the challenges our families are living. Also, just making sure we hear from our community. We’re fortunate that most of our staff are parents of Dup15q patients, but if we didn’t have that situation, constantly making sure we’re hearing from the community and then reporting that back to industry and letting them know here’s the need. Our kids are still having seizures. Our kids are still having GI issues and behavioral issues that need better treatment options. So, making sure that message is communicated back to the right partners.

Why people like working with you: I like to enjoy what I do. Most people do, but I like to make sure people are enjoying their jobs. I don’t think anyone should work eight-, 10-, 12-hour days and not love what they’re doing. And it’s important to me that my team feels like they’re in the right job. I feel that’s key. And then empowering people to do their job and giving them autonomy. I think that’s probably why I’m a decent leader as well because I also like to encourage them and find their strengths.

Mentor: There are a couple of people from my past career who mentored me, especially when I was in consulting.  I had the opportunity to work with an incredible team of leading nonprofit consultants and it was an incredible gift to my career. There is probably not a single person, but I am the first one who will jump in and ask someone who’s been doing what I’m doing and say, “Okay, teach me. What am I doing wrong? What can I do differently?” That’s what I want to be to others too. I get excited when someone says, “I’m starting a nonprofit. What kind of board do I need? I love being that to people and I think that’s why I liked consulting as well in my last job.  I am incredibly grateful to have had that and I want to share that with others.

On the Job
What inspires you: My staff inspires me. I watch them with their kids, their children who have Dup15q. If you’re not inspired by that, you couldn’t be driven to bring about change. As an executive director, it’s all inspiring. I watch my team juggle being a mom to more than one child, in many cases, manage a long list of therapy appointments, manage doctor visits, multiple seizures a day, behaviors from their child that could be potentially dangerous, medications, IEP meetings, and then they come to work every day.  How could you not be inspired by that. It is probably the most humbling job I have ever had because of what I see from our parents.

What makes you hopeful: Probably spending both time with our researchers and then also seeing other like organizations who are finding new therapies. The FDA approving some new therapies for a few gets me excited because feel like we can do that. We can be there. And then seeing kids who are trying new medications or therapies, especially for seizures, and they’re, “Okay, we’re down to two seizures a day.” That’s so inspiring and so hopeful that we can get that out for all of our families.

Best organization decision: The decision to set a strategy. That’s always important. In setting that strategy, we now have someone with the research bent, and then me from the nonprofit side. Having those two key people in the organization is fantastic. I need her expertise and she needs me to raise money. Setting the strategy and then realizing the need to have someone for both arms has been key.

Hardest lesson learned: The lessons we learn when we lose a child within the organization and the lessons we’re learning about SUDEP (sudden unexpected death in epilepsy). Those lessons are so hard. They’re so valuable for the future of medicine, but it’s so hard.

Toughest organization decision: Having only been with the organization now for seven months, I would imagine that the first giant leap into research was probably one of the toughest. Taking that initial step into research and investing funds that are going to take time to come to fruition. We know we aren’t going to see a return in six months, but you have to trust the process. I would imagine that was a pretty tough decision for them in their history.

Biggest missed opportunity: Our largest population of families right now is adults 18 and up. That probably was a big, missed opportunity many years ago but to no fault of anyone, just with advances in science and technology that allows families to find out sooner about Dup15q.

Not being able to connect to those families sooner and thinking of how many struggled in a lonely, isolated place until the internet allowed folks to connect with one another and have the information at hand about Dup15q. We started off with 12 families who had a loved one with Dup15q syndrome.  It’s sad that so many families had to go this alone for a long time until they heard about the Alliance.

Like best about the job: I love the mission. I love knowing that we can make an impact in the lives of families with a child with Dup15q syndrome. That’s my drive and passion every day—seeing what their day-to-day life is like. We love what we’re all about and that we could truly make an impact.

Like least about the job: Ten thousand percent—the loss of one of our Dup15q patients.

Pet peeve: Lack of communication. Communication is so important. It’s my biggest pet peeve when someone doesn’t communicate and you are left to try to fill in the gaps of what you don’t know. 

First choice for a new career: I would have loved to have been a pediatrician.

Personal Taste

Most influential book: Start with Why: How Great Leaders Inspire Everyone to Take Action by Simon Sinek

Favorite movie: Annie

Favorite music
: Anything acoustic, pop, just about anything except country music

Favorite food: Italian anything

Guilty pleasure: Trying new restaurants and wine

Favorite way to spend free time: Finding new adventures and doing that with my son.

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