Rare Leader: Emily Bell, Co-Chair and Co-Founder of The Bow Foundation

The Basics
Name: Emily Bell

Title: Co-Chair and Co-Founder

Organization:  The Bow Foundation

Disease focus:  The Bow Foundation focuses on GNAO1-related neurodevelopment disorders. GNAO1 (G Protein Subunit Alpha O1) is a protein coding gene. Some of the individuals with mutations on the GNAO1 gene suffer from seizures associated with early infantile epileptic encephalopathy-17 and others have mild to severe movement disorders all seem to have some form of developmental delay. To date, 60 people worldwide have been identified as having a mutation on the GNAO1 gene.

Headquarters: Charlottesville, Virginia

How did you become involved in rare disease: I was a Congressional staffer before I had my daughter and met with rare disease groups and advocates. Three and a half years ago I had Madeleine, who was born with a GNA01 condition. She sufferers from daily seizures, movement disorders, and severe developmental delays. I stopped working on the Hill and started caring for her full time. We started the foundation about a year ago.

Previous career: Congressional staffer working on healthcare policy on Capitol Hill for two different members of Congress.

Education: Bachelor’s degree in political science and anthropology/sociology from Westminster College in Fulton, Missouri.

The Organization
Organization’s mandate: Supporting GNAO1 families through enhanced research and increased awareness.

Organization’s strategy: Work efficiently as a team to enhance and support research and awareness. We are a group of all-parent volunteers who each have our own professional expertise. We have been working to try to utilize our skills towards our common goals.

Funding strategy: This is our first year. Our primary support has come from individual donors, and friends and relatives of people impacted by GNA01. Our strategy has been to galvanize a team of invested parents. Together we have worked with parents all over the United States who have helped to organize different events in their community and supported funding for research.

What’s changing at your organization in the next year: We’re launching an international patient registry in the next few weeks. We are also going to change the way we organize our annual conference. We were just excited to have doctors, researchers, and families in the same room for our first conference. This time, we’re going to try to host a research clinic at the same time to gather additional data on the patients. One day of the conference will be clinic visits and we’ll gather natural history data as well.

Management Style
Management philosophy: We are a team and together we are focusing on our joint mission.

Guiding principles for running an effective organization: Working with other impacted families to recognize the value in what we are doing and working toward a common goal.

Best way to keep your organization relevant: Partnerships. We’ve been working proactively to identify researchers, industry, community partners, and donors and helping to collaborate within these groups.

Why people like working for you: It’s the common goal of what we are working towards—trying to help our kids and others like them.

Mentor: I’ve had some amazing bosses in my career. In the rare disease space, our organization has progressed so much in the last 11 months because of the wisdom of the other rare disease leaders have been willing to share with us.

On the Job
What inspires you: The idea of a mother not holding a seizing child some day and the fact that I have done anything at all to contribute to that.

What makes you hopeful: The progress we’ve been able to make in 11 months makes me hopeful for science, research, and treatments for our patients that we will be able to support in the future.

Best organization decision: The decision to just get started.

Hardest lesson learned: Some things take a lot more time than I would have thought—like starting the patient registry. It’s been a lot more involved than I would have thought from the onset.

Toughest organization decision: We’ve only been around 11 months. I don’t think we’ve had one yet.

Biggest missed opportunity: After we hosted our first conference, we asked the doctors what they would change about the first meeting. They said if we had this many children with the condition in the same room again we would want to collect natural history information on them.

Like best about the job: The hope it gives me for helping my daughter and other kids like her.

Like least about the job: Choosing what we have to focus on next. There are so many things we can be doing to help our community.

Pet peeve: Medical care that isn’t collaborative, cohesive, or patient centered.

First choice for a new career: Working in policy of advocacy for rare disease or the disabled community.

Personal Taste
Most influential book: Caring for Children Who Have Severe Neurological Impairment by Julie M. Hauer

Favorite movie: Anything lighthearted. Something funny.

Favorite music: Anything that makes my daughter smile or makes here feel comforted from showtunes to church music.

Favorite food: Mediterranean

Guilty pleasure: Food—I’m pregnant right now.

Favorite way to spend free time: Reading.

June 7, 2018