Name: Connie Lee
Title: President and CEO
Organization: Angioma Alliance
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Disease focus: Cavernous angiomas (also known as cavernous hemangioma, cerebral cavernous malformation, CCM, and cavernoma) are vascular lesions comprised of clusters of abnormally dilated blood vessels. These lesions can be found in the brain, spinal cord, and, rarely, in other areas of the body including the skin and retina. Symptoms are highly variable among individuals. In some cases, no symptoms may be present. However, when symptoms do manifest they often depend on the location of the cavernous angioma and on the strength of the angioma walls and their propensity for bleeding. Cavernous angiomas can cause seizures. Cavernous angiomas can also cause neurological deficits, such as weaknesses in arms or legs, vision problems, balance problems, fatigue, and/or memory and attention problems. As with seizures, the type of deficit is associated with which part of the brain or spinal cord the cavernous angioma is located. Symptoms may come and go as the cavernous angioma changes in size with bleeding and reabsorption of blood.
Headquarters: Norfolk, Virginia
How did you become involved in rare disease: Like most folks who become involved, I have a child with the illness. She was diagnosed when she was four months old with a brain hemorrhage, and she had four brain surgeries before she was four years old. And after the third one, it was time to create an organization. There was nothing then. That was back in 2002. So that’s when I started it and reached out to Issam Awad, the neurosurgeon who had edited the textbook, and asked him for advice. He didn’t know who I was. I just wrote, “I’m a mom trying to start something here. What do you suggest I do?” And he offered that same day to be the scientific advisor. So, I created a website and a space for patient families to meet each other online, and the rest is history. It’s been almost 17 years now.
Previous career: I am a clinical psychologist by training. I had to stop practicing after my daughter’s second surgery. It was just too disruptive to my patients for me to be stepping out in order to spend weeks with my kid either in the hospital or later in rehabilitation.
Education: BA in Psychology from Swarthmore College and a Psy.D. from the California School of Professional Psychology
Organization’s mandate: Our mission is to inform, support, and empower people who are affected by cavernous angioma, and drive research for better treatments and a cure. We say that we do this by developing and executing strategic, creative, high-return interventions as a model for rare diseases.
Organization’s strategy: Our strategy has always been to develop shared resources. We do not fund very much research at all. That’s something we leave to the National Institutes of Health. We have created a DNA and a tissue bank. We run the international scientific meeting. We have a growing patient registry at www.angiomaregistry.org. We offer free genetic testing. We are doing a whole bunch of things that prepare our patient population for research participation and offer tools for the entire research community to use.
Funding strategy: We create a vision and then we reach out for partners. It’s worked so far.
What’s changing at your organization in the next year: We’ll have a number of changes, but the main thing is that because there is now a first clinical trial with very narrow inclusion criteria, there’s this incredible laser focus on expanding our known patient base, so recruitment, recruitment, recruitment, outreach, and grassroots growth. Last year, we began a community alliance program—basically chapters but not legal entities—and we’re working to explode the number of community alliances we have to assist with patient education. We want everybody to understand what a clinical trial is and how they can be participating in it, if they’re appropriate.
Management philosophy: I think that it starts with hiring the right people. We’re a virtual organization, so I don’t get to supervise anybody face-to-face. I try to mentor for excellence, by having self-motivated people who are striving with me for excellence. That’s the key to getting where we’re going. But at the same time, I try to be mindful of folk’s work-life balance and the potential for burnout.
Guiding principles for running an effective organization: In our case, it’s been staying lean and being open to change, not becoming bureaucratic. We tend to have a very non-hierarchical approach. And this could also be because all of us are moms and we’re all working as co-equals. I think each of us has our own area of expertise, but that doesn’t mean any one area is more important than another.
Best way to keep your organization relevant: The best way to keep the organization relevant is to listen. That is the only way to keep the organization relevant—listening to the stakeholders, listening to the researchers, listening to our families, listening to the other staff members. It is really all about listening and synthesizing that information into a creative vision of our potential. The end goal is always better treatments, a cure, and a patient population that feels empowered, and informed, and supported.
Why people like working with you: I’m probably not the easiest person to work for it, but I value the people who work with me tremendously. And I do think there’s no one who’s working for me that doesn’t feel like they haven’t gotten better at what they do.
Mentor: There’s actually been a number. I’ve been doing this for a lot of years, so I’ve had lots of opportunities to learn. One of my first mentors was Sharon Terry who is the CEO of the Genetic Alliance. There have been a whole bunch of women who are founders or CEOs of patient advocacy organizations. Marianne Clancy from Cure HHT organization, Shelley Bowen of the Barth Syndrome Organization, and then folks that don’t even know I know them, like Kari Rosbeck from TS Alliance. Her organization is awesome. I look to what these women do as we think about what our organization is going to do.
On the Job
What inspires you: Our families inspire me. We have some incredible family stories of strength and resilience. The fact that they trust me to work on their behalf is just humbling.
What makes you hopeful: The brilliance and enthusiasm of our researchers really provides the biggest hope, but I also think the fact that our families are willing to be engaged in the process is tremendous.
Best organization decision: I think our best decision has been keeping a board that is comprised entirely of either patients or family members of patients. Every single person on our board has had a direct connection to the illness. That keeps our board with their eyes on the prize. It would be easy to get off mission, but for these families it’s way too personal and so they don’t. And they put in many, many hours.
Hardest lesson learned: Patience is definitely the hardest lesson learned. Statins were identified as a potential treatment for this illness in 2009. We are just starting the first trial of a statin, and no trials have happened in between. In my naivety, I thought for sure 2010 would see the first trial, but there was a lot of work to do in between that initial discovery and it finally being something that could be tested in our families. That was a long 10 years. So yes, patience. And we still don’t have a real treatment; it’s just that now we’re starting trials.
Toughest organization decision: The Baca Family Historical Project in New Mexico was a leap of faith. The Baca Family Historical Project attempts to wed history, genealogy, and health education to improve health outcomes for people who are affected by this illness. We do this in New Mexico where there is a founder mutation. We know the founding family, the descendants of Cristobal Baca II, who was born in New Mexico in the mid 1600s. In New Mexico, we host public conferences that inform the general public about the importance of New Mexican Hispanic history and that include family tree workshops, and genetic testing to folks who are at highest risk for the illness. The program has been very effective in increasing the numbers of people who are identified. For example, the University of New Mexico saw 29 cavernous angioma patients in 2016. In 2018, they saw over 300. This is echoed around the state. The project was either going to fall completely on its face, or it was going to do great things. And happily, the second turned out to be true. But it was a tough decision to dedicate 25% of our budget to a high-risk, out-of-the-box scheme. We had to ask for foundation support: Global Genes gave us $10,000, but another foundation has committed more than $200,000 to date.
Biggest missed opportunity: I miss opportunities every single day, and the reason that I miss them is lack of time. The biggest opportunities I miss are the opportunities to get to know the families that are involved with us. I can encounter some briefly on Facebook, and I can talk to a family or two a week, but I can’t get to know everybody, and everyone has something to offer. If we could just use it all and access everything that everyone can offer, we probably would be a lot further along.
Like best about the job: I love being able to have an impact. I wake up every morning thinking about, what I can do today to make life easier for the folks that are affected with this, and how we can get to a place of folks not having to worry if this is the day that they’re going to have a brain hemorrhage?
Like least about the job: Probably every job has some little administrative, dealing with bureaucracy, kind of things, and those probably are the things that I tend to put off until last. But I think in general there isn’t a whole lot not to like here. I created this job. If I don’t like it, it’s because I’m doing something wrong.
Pet peeve: The one pet peeve I have is hearing folks say, “‘Someone’ should do something about that.” I feel like that’s dodging responsibility. If I see something I don’t like, then I either need to be part of the solution or I need to shut up. We’re the ones who have to take this on and make it happen. There is no they; it’s us. No one is going to have a greater stake in cavernous angioma than we are.
First choice for a new career: The dream job would be a nature and travel videographer, but the reality of what my next job is going to be is I will be an advocate for rural housing and support services for the disabled. It’s really, really hard to have disability and to live in the country, but it shouldn’t have to be.
Most influential book: Starting and Sustaining Genetic Support Groups by Joan Weiss, who is the original founder of Genetic Alliance. If somebody could have written a bible for what I do right now, that was it.
Favorite movie: That’s a hard one. The Princess Bride is fun, but I never miss a Star Trek or Lord of the Rings movie.
Favorite music: Americana. I was a Brandi Carlile fan before it was cool.
Favorite food: New York pizza
Guilty pleasure: Long drives – I spent six months driving around the country with my daughter when she was 12. I would do it again in a heartbeat if I could.
Favorite way to spend free time: Travel and hiking, and then I have a couple of book clubs that I belong to, and so we drink wine and laugh, and talk about books every once in a while.