Rare Leader: Christina SanInocencio, Executive Director, LGS Foundation

The Basics
Name: Christina SanInocencio

Title: Executive director

Organization: LGS Foundation

Social Media Links:

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Disease focus: Lennox-Gastaut syndrome, a rare and severe form of childhood-onset epilepsy

Headquarters: Bohemia, New York

How did you become involved in rare disease: My younger brother, Michael, was diagnosed with LGS at the age of three. He is now 32. We’ve been dealing with this for almost 30 years now and have been part of the rare disease community for almost as long.

Previous career: Previously, I worked in TV and film production and as a college instructor in communication and public speaking.

Education: BFA communications/electronic media, Long Island University; MS media studies from Brooklyn College; Advanced Graduate Certificate in health communication public health from Stony Brook University; Ph.D. in Health Communication from University of Maryland

The Organization
Organization’s mission: Our mission is to improve the lives of individuals living with Lennox-Gastaut Syndrome through research, family support programs, education.

Organization’s strategy: We have a five-year strategic plan that is unrolling right now. There are four pillars of our strategic plan with the overarching goal of ensuring that the voices of those living with LGS (and their caregivers) are heard. We also strive to empower LGS families to advocate on behalf of their loved ones.

Funding strategy: We receive about 60 percent of our funding from pharma and industry partners. Approximately 40 percent is raised through grassroots initiatives, fundraisers, and by our families.

What’s changing at your organization in the next year: We’ll be focusing on building our infrastructure, specifically on staff personnel and our ambassador program, (we have 48 ambassadors across the country) whom we can leverage to lift us up to the next level.

Management Style
Management philosophy: We have a versatile management philosophy. Instead of trickle-down, we employ our community to guide us. We do community assessment surveys to make sure that we are meeting the needs of the community first. Our organization is largely guided by our constituents, those who live with the disorder every day.  We have a board of directors that helps to guide us as well as our professional advisory board

Guiding principles for running an effective organization: One of the biggest things for me, personally, is effective communication, and making sure that the employees of the organization are communicating effectively with different stakeholders. These stakeholders include our families, our partners, our ambassadors, our board of directors, and our professional advisory board. There can often be many “moving parts” at the same time, so without effective communication, it makes meeting goals more difficult.

Best way to keep your organization relevant: We do a number of things to keep relevant. For example, we just held our first patient-focused drug development meeting with the FDA. We had nine caregivers testify, and over 100 stakeholders attended in-person to listen to the voice of the patient (caregiver). Hundreds more tuned into our live stream. That’s a testament to how we continue to harness opportunities with vested stakeholders to maintain relevance. We also host a large family and professional conference every 18 months, which ensures that family members are kept up to date on the latest developments in LGS. Our programs speak for themselves in terms of relevancy, along with community assessment surveys, which guide future endeavors here at the LGS Foundation.

Why do people like working with you: We are passionate. Our entire staff is comprised of LGS caregivers, so we intimately understand the disease and the toll it has on those who are living with it.

Mentor: Tracy Dixon Salazar (Director of Research and Strategy for LGS Foundation). She’s a doctor of neuroscience and was inspired to get her PhD because of her daughter’s diagnosis of LGS. In fact, she sequenced her daughter’s exome and discovered her daughter’s genetic cause. Tracy is amazing and we’re lucky to have her on our team.

On the Job
What inspires you: My brother Michael inspires me every day.

What makes you hopeful: When I see or hear stories of people like my brother improve in any way, well, that inspires me. LGS is devastating, so when we learn of children or adults with LGS make improvements in areas like seizure control, or behavioral issues, or mobility, or even when an individual does something new that they’ve never been able to do before, we become elated!

Best organization decision: Growing our staff. Growth can be scary, especially for organizations that have smaller operating budgets, but it’s a necessary step.  I would suggest to any other nonprofit that’s growing like we are that sometimes it’s okay to make that leap and hire the staff that’s needed because it can change the entire landscape of an organization.

Hardest lesson learned:  The hardest lesson I learned is that we can’t do everything in a day. And while we all want a cure for our diseases yesterday, sometimes we need to step back and look at things we CAN do right now for the families.

Toughest organization decision: Professionalizing: making the transition from the kitchen table to the boardroom.

Biggest missed opportunity: Grants – not one specific grant but relying too heavily on one type of funding. Diversifying our funding is important for the longevity of our organization and gives other stakeholders opportunities to be involved in our community.

Like best about the job: I love working with our families. I call them my friends because they are. I love being able to learn about their children and be there for them if they need help.  Social media has a big impact on the way that we communicate with our families, and it’s nice to be connected with them to know how their children are doing (and how they are doing as well).

Like least about the job: The emotional stress. It does take a toll seeing families who lose children or whose children are very sick and feeling helpless. It takes an emotional toll on me and my staff.

First choice for a new career: My heart will always be with the LGS Foundation. I don’t plan to leave the organization, but I do also love teaching college-level students as an adjunct.

Personal Taste
Most influential book: Forever: A Novel by Pete Hammill

Favorite movie: Elf

Favorite music: The Beatles

Favorite food: Thai food

Guilty pleasure: Travelling

Favorite way to spend free time: Binge watching something silly on Netflix