Rare Leader: Krista Vasi, Executive Director, Usher Syndrome Coalition

The Basics:
Name:  Krista Vasi

Title: Executive director

Organization: Usher Syndrome Coalition

Social Media Links:

Disease focus:  Usher syndrome, the most common genetic cause of combined deafness and blindness. The Usher Syndrome Coalition supports everyone with Usher syndrome, with any subtype, worldwide.

Headquarters: Maynard, Massachusetts

How did you become involved in rare disease:  It sounds strange, but I can draw a straight line from my current role as an advocate for the Usher syndrome community back to September 11, 2001. I was a junior in high school, and pretty shy with virtually no leadership experience. In the days that followed the tragic events of 9/11, I was driven to do something to bring people together. I organized a candlelight vigil that gave hundreds in my small town a place to gather, a place to grieve. I remember one mom and her daughter who arrived late to the vigil, having traveled from out of town to participate. This mom was in tears because she had missed it. There were about a dozen of us still there, cleaning up. We gathered with her and her daughter, linking hands around the flagpole as my friend sang the Star Spangled Banner. It was in that moment that I knew I wanted to continue to connect people. I pursued a career in nonprofits, knowing that was the most likely field to give me that opportunity. It was through networking during graduate school that I found this work and met Bella Dunning, nine years old at the time and the first person I’d meet with Usher syndrome.

Previous career: Prior to joining the Usher Syndrome Coalition, I was director of operations for the Decibels Foundation, a nonprofit organization dedicated to supporting children with hearing loss and their families.

Education: Bachelor of arts in global studies from the University of California, Santa Barbara; master’s in public administration, with a focus on nonprofit management from the Maxwell School of Syracuse University

The Organization
Organization’s mandate: The Usher Syndrome Coalition aims to find and connect the 400,000+ people living with Usher syndrome worldwide with researchers, vital information, and with each other. By bridging the gap between researchers and those impacted, we will accelerate the full understanding of Usher syndrome. 

Organization’s strategy: The Usher Syndrome Coalition recognizes that the most critical step to finding viable treatments for Usher syndrome is access to an engaged community. Our strategy is driven by the input of true experts in the community – individuals living with Usher syndrome and their families. Following their mandate, and setting us apart from other Usher related groups are:

• The USH Trust, the largest international registry of those living with Usher syndrome. It is also our most valuable tool for accelerating research and clinical trials.
• Annual conferences. We have hosted thirteen annual family conferences and two international scientific meetings. Our past two conferences were hosted virtually, enabling those who might never have been able to attend the ability to participate from the comfort of their own home. We also work hard to make every session accessible via spoken language, live captions, sign language interpretation, and text transcripts. Our 2021 conference also included spoken and captioned Spanish language translations for all of our live sessions.
• Our team of USH Ambassadors plays a key role in growing our global community. This international group of volunteers educates others about Usher syndrome, the USH Trust registry, and available resources. They serve as the point of contact in their state or country, building local Usher communities one person at a time.
• Our private, moderated Google forum, the “USH Blue Book,” provides a safe place for the community to post questions, share experiences, and discover resources.
• Collaboration with other Usher related nonprofits as “USH Partners” has allowed us to expand our scope and reach while avoiding duplication of services.

Funding strategy: A majority of our funding comes from individuals in the Usher community. We are proud of our accomplishments in our 12 plus years. Our careful use of resources has allowed us to provide quality information and services on a modest budget, but we know we can offer so much more. Industry partnership will be a key strategy as we rise to the next level of bringing treatments to people living with this rare disease.

What’s changing at your organization in the next year: The Usher community has waited a long time for the pharmaceutical industry to invest in Usher syndrome. In the past five years or so, an increasing number of biotech companies are noticing this energized community, poised to participate in research and clinical trials. By formalizing partnerships with biotech, we will ensure the patient perspective is at the forefront of trial development and that there is no delay in educating, engaging, and identifying potential trial candidates.

Management Style
Management philosophy: Our administrative team is “small but mighty,” and we each possess unique skills, expertise and a drive that complements and fuels each other. Together, we support the overall achievement of our mission, while allowing for individual growth and creativity.

Guiding principles for running an effective organization: Open lines of communication, accessibility, and transparency.

Best way to keep your organization relevant: Collaboration is key. We aim to include, listen to and lead with members of the Usher community that represent the diverse and varied experiences living with this rare disease. Generationally, the needs and perspectives of an adult born with Usher syndrome 60 years ago are vastly different than that of a child diagnosed with Usher syndrome today. We know we can’t be everything for everyone, but we do aim to offer something valuable to all.

Why people like working with you: I am committed and loyal. I don’t view this work as a job. This is something I am passionate about and I’m in it to the end. I can’t imagine doing anything else until there are adequate supports for everyone in the community, and treatments available to everyone who wants them. I also listen to others’ viewpoints and ideas and collaborate as much as possible.

Mentor: My most formative mentor in my career has been Mark Dunning, the founder of the Usher Syndrome Coalition and father to Bella, who has Usher syndrome. Mark has always been the “big picture” guy, seeing the gaps that need to be filled and leading with clarity and focus. He helped instill in me the confidence to lead and the wisdom to listen to the community.

On the Job
What inspires you: Our USH Family, as we like to call it. Twelve years ago, Bella Dunning became my first Usher family member. Today, I feel my family has grown exponentially. I wasn’t born into it, but this family has changed me all the same.

What makes you hopeful: The pace of research and progress towards treatments is truly speeding up. Things that seemed vaguely possible five years ago are becoming real and tangible.

Best organization decision: Fostering collaboration by forming USH Partnerships. This community is too small, and resources are too finite, to operate in competition. By fostering lasting partnerships with the growing number of Usher-focused organizations around the world, the Coalition facilitates collaborative efforts, minimizes duplication and creates a global network of support.

Hardest lesson learned: If you don’t ask, you don’t receive.

Toughest organization decision: We had a rough patch about four years ago, when we were running out of funds and had to go on an austerity budget. That was a tough decision, but the community came back with support and we were up and running within a few months.

Biggest missed opportunity:  I’ve talked with my team about this and we’ve had to really stretch to think of any missed opportunities or regrets. We think this is a testament to our decision-making process. We may angst or struggle, but once we made a decision, we went with it. We know it was the best we could do at the time and we’re more excited than ever about what the future holds for the Usher syndrome community and the Coalition.

Like best about the job: Connecting people.

Like least about the job: Not having enough time to do all the things.

Pet peeve: When individuals start a new organization in a rare disease space without reaching out to those already active in the community and exploring opportunities for collaboration. We love to collaborate and there are so many niches that need to be filled.

First choice for a new career: I’d open a café/used bookstore.

Personal Taste
Most influential book: How to Be an Antiracist is top of mind lately. Ibram X. Kendi is a gift and this should be required reading. Also Brené Brown’s Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead

Favorite movie: It’s a Wonderful Life—it’s one of the few movies I can rewatch every year. 

Favorite music: I like a range of music, from indie and folk/acoustic to pop, hip hop, and classical. It depends on the day and mood.

Favorite food: Pretty much anything with avocados.

Guilty pleasure: Ice cream

Favorite way to spend free time: With my husband, our two young children, and our dog, renovating our home, gardening, hiking, and adventuring.