Rare Leader: Sarah Chisholm, Executive Director, BPAN Warriors

The Basics
Name: Sarah Chisholm

Title: Founder and executive director

Organization: BPAN Warriors

Social Media Links:

Disease focus: Symptoms of BPAN typically start to appear in early childhood. This includes pervasive developmental disorders, seizure disorders, and abnormal sleep patterns. Secondary symptoms include eye disease, orthopedic dysfunction, psychiatric and behavioral issues, and other manifestations. In late adolescence or early adulthood, other symptoms including Parkinsonism, muscle problems, and cognitive issues can develop. BPAN’s biphasic disease progression includes global delays, little to no expressive language, epileptic encephalopathies, Rett-like symptoms, sleep abnormalities, Autism-related behavioral and social challenges and ophthalmologic deficits beginning in early infancy. Patients experience slow motor and cognitive gains until late adolescence or early adulthood at which time, BPAN leads to progressive dystonia, parkinsonism, and neurologic deterioration and loss of cognitive and reasoning abilities (dementia).

Headquarters: Boca Raton, Florida

How did you become involved in rare disease: I have a daughter named Eva. She is the youngest of my three girls. On March 28, 2017, we had gone in for her fourth genetic appointment and she was diagnosed with BPAN. About two weeks after her diagnosis I got myself steeped in research. In November 2017, I decided to develop a website for BPAN. I had spent hundreds of hours of research and there was no BPAN website. I didn’t want other parents to go through that. That was the start of it.

Previous career: Owner of small boutique, decorative door hardware company.

Education: Attended the University of Pennsylvania for three years as an English and fine arts major

The Organization
Organization’s mission: To actively support, facilitate and expedite therapeutic initiatives and scientific research that will enhance the quality of life for individuals living with BPAN by mobilizing and empowering BPAN Warrior families worldwide, through access to community resources, information and most importantly, connection to our BPAN Warrior Tribe. Our community is still small. We’ve had tremendous growth since Eva was diagnosed. Today we are at about 500 patients. Our community is still scattered geographically. It’s so important after getting a diagnosis, sometimes after years of searching, that people know they are not alone, and if and when they are ready, there are available resources and research.

Organization’s strategy: As an organization in its infancy, it’s multifold. When I started the organization, it was providing patient support, information, and connection. I had a lot of thoughts and ideas and needed to put that energy someplace. Today, that strategy has morphed into something that is a lot more formalized. I hired a nonprofit consultant and we are currently in the process of developing our scientific and medical advisory boards. We have done an internal assessment of the needs of the community. Right now, we’re aligning ourselves with organizations and companies that have been in the rare disease space and that have been able to advance research quickly and efficiently. We are not looking to re-invent the wheel – time is not in our favor. We are focused on identifying existing capabilities that may be repurposed to meet our community needs in data collection, community infrastructure and governance and most importantly, establishing a network of research collaboration. It is exciting and sometimes a bit unnerving and overwhelming how quickly things are moving.

Funding strategy: Right now, we are developing that too. We have two grant specialists. One comes from the Parkinson’s Foundation and the other comes from a sister organization in a similar rare degenerative condition. It’s a mix of annual appeals and direct grant submissions. We are getting some support on how to submit for workshop funding from NIH and of course there has been some direct funding from patient families. My goal is to look towards larger revenue streams to eventually allow families to fundraise for their own needs and focus on where we can collaborate with other organizations to better utilize existing resources. Also, we hope to leverage the heightening interest in rare diseases to seek funding from biotech and venture capital sources interested in autophagy/ neurodegenerative related diseases.

What’s changing at your organization in the next year: We hope to announce our Scientific and Medical Advisory Board and also launch a large research initiative. It has not been finalized yet, however we hope to make our announcement in the near future.

Management Style
Management philosophy:  Be open to collaboration. Allowing individuals to bring to the table their skill sets and providing for our autonomy. In order for an organization to grow and flourish, it’s important for any manager to allow people to do their job and provide support. That can’t happen if they are micromanaging. And always be honest and transparent.

Guiding principles for running an effective organization: Honesty, open-mindedness and a willingness to learn from others helps to build an environment of safety where we can learn from our mistakes, take responsibility for our actions and short comings and build a strong foundation of trust. Without these essentials, true collaboration is not possible. Personally, being willing to ask for help, willing to admit when I don’t know, and allowing others to provide the necessary input when needed has helped me tremendously in effectively managing our organization’s accelerated growth.

Best way to keep your organization relevant: Raising awareness on a national/international level, by not only sharing the science, but sharing our stories and speaking from the heart. There is nothing stronger than the will of a parent who shares their story to a directed audience. While a strong strategic plan, scientific medical advisory board, and an understanding of our community and research needs are imperative, they may not yield as much benefit, as when coupled with a compelling story. Every community member has a story and it is our job to get that story out to a wider audience. That and living by philosophy of never giving up. It sounds cliché, but I’m investing the rest of my life to BPAN Warriors. I’ve promised other BPAN families and more importantly, I’ve promised my daughter.

Why people like working with you: I think they recognize my sincere passion, persistence and dedication and understand that I have the willingness to work hard and dig deep. I know I have very strong beliefs and convictions, however I would like to think that I am always willing to listen to others even if we have divergent opinions. Also I think there is a lot to be said that I am willing to admit if I have made a mistake or if I don’t have the answer – this happens a lot! I believe that this ensures my ability to learn and grow and form genuine relationships with others.

Mentor: One of my nonprofit consultants, Mara, is definitely a source of great insight and direction. She  is someone who has been in the nonprofit space for many years. Not only does she provide incredible professional support, she has the ability to help me to always remember to focus on our mission and remind me what is important. Her honesty, humor and above all, kindest and empathy is always appreciated, especially when I am bone tired or so steeped in a project that I forget about self-care. Balancing the rigors of home life and challenges of building a non-profit from the ground up can be all consuming, however Mara does an incredible job facilitating that forward movement while providing a sounding board and honest friendship.

On the Job
What inspires you: My kids and the stories that I hear from other families.

What makes you hopeful: Knowing that autophagy has emerged to play such a critical role in neurodegenerative conditions, cancer, inflammatory diseases and autoimmune conditions (just to name a few), is what allows me to have hope that a cure for BPAN is actual possible within my daughter’s lifetime. Also today we have the ability to leverage new technologies, patient-centered data collection systems and ongoing data analytics and systems biology which may allow us to identify biomarkers, test new and existing drugs and potentially apply existing gene therapies to cure a relatively simple, monogenic disease science.

Best organization decision: To hire professional help. Although I love volunteers, hiring professionals who are seasoned in the space has helped to move things forward exponentially.

Hardest lesson learned: As much as I want to share everything that I have learned over the last two years, I have learned that it is not my job to teach or educate anyone, rather my sole purpose as an advocate is to share my experience, strength and hope. I have learned this the hard way. Every family in our community is on such an individual journey of discovery and not everyone shares the same singleness of focus that has driven me over the last two years. I have had to learn to allow families to find their way and allow them to reach out to me when they are ready.  Ultimately, regardless of where we are in our journey, I recognize that we all love our children and truly want what is best for them.

Toughest organization decision: Forging ahead without consent and approval from a larger patient organization.

Biggest missed opportunity: I think I could have done a better job early on communicating with our BPAN families about the actual work that BPAN Warriors was doing to advance research and patient initiatives. Given our limited resources and the pace at which things were evolving, I think it would be fair to say we missed an opportunity to connect with our community. As an advocate, involving the patient stake-holder community is my top priority. Recognizing that there were failings on this end has made me take a look at how we can improve communication moving forward.

Like best about the job: The people. The families. Being able to often be the first point of contact for families that have gotten a BPAN diagnosis and being able to connect with them and hear their stories and being able to share my story.

Like least about the job: Balancing the many hours of work required to build a nonprofit from scratch and self-care, family care, finances, and life. It’s trying to establish a balance.

Pet peeve: Dishonesty – whether its acts of omission or commission.

First choice for a new career: I think I’m living it right now. It’s not one that I would ever dream of, but nevertheless it is one that I have chosen. I can’t imagine doing anything else. I find the science, brain, body, and research fascinating.

Personal Taste
Most influential book: A Tree Grows in Brooklyn by Betty Smith 

Favorite movie: The Breakfast Club—it recalls a fundamentally awkward time in my life. It brought me a lot of comfort.

Favorite music: Annie Lennox and Sade

Favorite food: Crème brûlée

Guilty pleasure: Going to the movies by myself

Favorite way to spend free time: Practicing yoga, working in my garden, or doing a number of the hundred different craft projects I have in mind that I never get to.