Rare Leader: Vanessa Vogel-Farley Executive Director Dup15q Alliance

The Basics
Name:  Vanessa Vogel-Farley

Title:  Executive director

Organization: Dup15q Alliance

Disease focus:  The disease focus is dup15q syndrome, which is a clinically identifiable syndrome that is caused by a duplication on the q arm of the 15th chromosome that goes from 15q11.2 to 15q13.1. There are a couple different genetic mechanisms that result in the duplication that can get you there but it all falls under the dup15q syndrome umbrella. Dup15q syndrome can include epilepsy, hypotonia, autism, social deficits, ADHD, anxiety, and a whole host of other neurodevelopmental issues.

Headquarters: Highland Park, Illinois

How did you become involved in rare disease: My background is actually in child development, and specifically neuroscience in child development, so I started my career studying EEGs and how brains are different in children who grow up to be non-neurotypical. I did that for about 12 years, and after I had my third child, I decided that I was going to take a little bit of time off and during that time I worked for another non-profit that I help found. In that time, while helping the other non-profit, I was consulting with different research groups that were starting rare disease research. Research on rare disease can be quite expensive, and sometimes researchers can get caught up in the question they want to answer, and not necessarily how to get there. You need to take into account the symptomology of the population and what research methods they can complete. I went in and helped them evaluate their research methods to ensure things were in place to answer their research questions. If you’re spending a lot of money bringing in a whole family and using research methods to answer questions that could never be completed by most families, it’s going to be frustrating for the researchers and families and will not lead to timely results. During that time, I consulted on a project with Dup15q. I went to their conference and collected some EEGs with a collaborator out of UCLA and really enjoyed it. I had a bit of experience with rare disorders prior to leaving research, but that’s really where I got my passion for rare diseases specifically. So when the executive director for the Dup15q Alliance retired, she called me and said, “I think you’d be a good fit for this.” A couple of the people from the community reached out as well, and I applied, and that’s how became the executive director of the Dup15q Alliance.

Previous career: Neural developmental researcher

Education: B.A. in biology and chemistry from the University of Minnesota

The Organization
Organization’s mandate: To improve the lives of patients and families affected by dupq15 syndrome.

Organization’s strategy:  We have a three-prong approach. It’s education, advocacy, and research/medical care. We want to improve those different things in the community and drive research forward.

Funding strategy: We started as a small non-profit, so our funding is mostly grassroots from our actual community. The funding strategy is changing. Prior to me, it was run by a parent of a child with dup15q, and then it was all volunteer and a parent- or grandparent-run organization. They brought me in as a non-parent, professional executive director to take the organization to the next level, bring in different income, for example industry grants, as well as expanding the grassroots fundraising through events, and that sort of thing too. We have moved in that direction by adding some grants and larger gifts, and some industry sponsorships as well.

What’s changing at your organization in the next year: The research focus is changing. We supported a fair amount of basic research, but I think we are going to be focusing more on the development of the disorder, specifically. When do things change or happen as the person with dup15q syndrome gets older, focusing on more of the family requests, the parents’ questions that come in after you’ve been diagnosed, what to expect, etc. We’re going to focus on those big questions and answer those questions more effectively.

Management Style
Management philosophy: I’m a collaborator. I’m a very clear communicator when it comes down to what my goals are and what my priorities are. We’re a small organization and it’s a rare disorder. Finding collaborations with other organizations that can help manage both the organization, as well as the voice of the community, is really important.

Guiding principles for running an effective organization: Be open and honest. I’ll say “collaboration” again—being willing to share, willing to take feedback, willing to say “You’re better at this. Can I have that? Can I use that? Can I change something that is out there up for my population?” is really important, especially in these kinds of organizations. Rare disorders, rare disease organizations, a lot of them end up reinventing the wheel and spending a lot of time, effort, and money for things they possibly could have had a much easier and much faster by going out and saying, “Can you help me with this? You’ve done it so well, please help me.” So that’s my guiding principle: don’t reinvent the wheel, find people that can help you and support you, and then do the same.

Best way to keep your organization relevant: Being at the forefront of research, medical care, and education, knowing as things are coming out, especially with genetic therapies and that sort of thing.   Then knowing where they can apply to our community versus where they can’t apply to us and where we need to push harder. The same thing goes for understanding the larger picture and seeing the forest for the trees, understanding when the trees are important and when to focus on the forest. That’s what I try to do for the Dup15q Alliance—keep our name out there even though we’re small. We keep our name out there in the bigger picture. We’re attending larger epilepsy conferences, larger autism conferences, while keeping the heart and soul, the dup15q syndrome mission.

Why people like working with you: I think it’s because I’m direct and honest. You always know where you stand, but at the same time I tend to be fun to be around, that might be why.

Mentor: I would say I have several mentors. My original mentor was my mom. My mom has a bachelor’s degree in nursing. She’s a very intelligent woman and always taught me to speak my mind and drive anything I can forward and make it better. Once I went into science, my mentor at Children’s Hospital Boston was Dr. Charles Nelson, who introduced me to research in neurodevelopment. He taught me how to do research well, and do research that was relevant and important, and not just necessarily answering a scientific question, but really doing it in a way that could make an impact on a person or society.

On the Job
What inspires you: The families with whom I interact with every day. I always say that dup15q syndrome chooses families and is not chosen by anyone, but each family I talk to rises to the occasion and the burdens that come along with it in a different way, their way.  Each one inspires me in a differently. The way that they can get involved in the organization and the community and support each other while going through something that affects every aspect of their life is really inspiring. That keeps me going. I want to make their lives better. I want to make their lives easier. I want their kids to be the best that they possibly can be, and I want them to do it in a way that they can thrive.

What makes you hopeful: The dup15q community itself makes me hopeful—the way the community bands together.

Best organization decision: I think the best organization decision was made prior to me. They made the conscious decision to go  from being a patient advocacy organization where they were just connecting families to really saying. “We want to focus on improving research and knowing more about the disorder.” They also decided to invest in ways to get better clinical care, finding people that they can educate about the disorder, and learn with them the best way to treat patients with Dup15q. Using what they learned from patient advocacy in the community to improve those two things.

Hardest lesson learned: I can’t fix everything.

Toughest organization decision: I don’t think I was a part of that one but being in it now, I think it was tough for them to make that leap to find someone external to help lead. I think that, as with any patient advocacy organization, you want to keep your population, your community, at heart, and to go outside of that is tough. How can they trust somebody that doesn’t really “get” them, doesn’t know what they are going through? How could this person coming in, walk a mile in my shoes? She has no idea how they fit. I think that’s what at the back of many families’ minds. I think that was really tough for them to say “Yes, lets push past those feelings, we know we need this change to move to the next level and we think this is going to be a good thing for the organization.”

Biggest missed opportunity: It seems like this is the case with a lot of the rare disorder groups but making sure to look into characterization of the disorder in the patients to address more patient life burden questions with the same power as focusing on bench research. Everyone wants to find the answers via animal models, mechanisms, etc. but that may neglect addressing the questions that families who are living day-to-day with the disorder need answered to help them. The Dup15q Alliance has really taken most opportunities presented to them, but I think focusing a little bit too much on bench research early on without having the patient voice driving some of the research. But in reality  I don’t think it was actually a missed opportunity, we did incorporate it later.

Like best about the job: I love the families, I love the Dupers. The families, their resilience and their hope, their ability to love their children and be able to meet them where they are, is inspiring.

Like least about the job: I don’t like the non-profit “business” side of it. It’s a lot of paperwork to keep a non-profit going and compliant. I can do it well, but it’s not the most fun part of my job—filing paperwork.

Pet peeve: My pet peeves are general to rare disorders, not necessarily specific to ours. They are the Internet and social media. They are tough to deal with at times. At times they can be our most powerful tool and other times our worst enemy. People take what they read on the Internet as fact, when it could be just incorrect, or somebody just put it out there as this is true, or even at times old research. As a rare disorder, we learn more about the disorder as more patients are identified and give information, so even research findings can update and change. It’s one of my big pet peeves when somebody comes to me and says “Well, I read this here,” and you say, “Well, that was true 15 years ago, but it may not be true any longer and this is why.”

First choice for a new career: I grew up on a dairy farm in Wisconsin, so I would say if money is no object, I would probably go back to something like that. Gardening and farming is something that I would love to do in a more impactful way. My husband and I have been talking about how we’d like to open a working farm—not necessarily a traditional farm, but a place that people with developmental disorders could work and contribute. There’re things out there like that, but I think that’s something that would put together all of my interests and answer a call that some of the families need and want. They want their kids to be able to be empowered and employed, something that gives back, that the Dupers can enjoy.

Personal Taste
Most influential book: Bossypants by Tina Fey, not because it’s actually influential, but it’s just what popped into my head.

Favorite movie: Top Gun

Favorite music: Dave Matthews Band

Favorite food: Sushi or Indian

Guilty pleasure: Binge watching Netflix and wine

Favorite way to spend free time: With my kids and my family

November 22, 2018