RARE Daily

Rare Leader: Susan Foley, Executive Directors, HESA

February 13, 2020

The Basics
Name: Susan Foley

Title: Executive director and cofounder

Organization: Hashimoto’s Encephalopathy SREAT Alliance (HESA)

Social Media Links:



Disease focus:  Autoimmune Encephalopathies are conditions in which patients suffer from neuropsychiatric dysfunctions including memory loss, delusions, hallucinations, uncharacteristic behaviors, movement disorders, and seizures. It has only been really and rarely diagnosed within the past eight years, however in the past two years or so there has been a spike in diagnosis. The problem is there are few doctors who understand this disease and who are able to diagnose it. Then the next problem is once you have a diagnosis there are very few doctors and places that know how to treat with proper immune suppressive treatment.

Headquarters: Woodstock, Illinois, although I live in Green Bay WI. And our members are from all over the world. 

How did you become involved in rare disease:  I was diagnosed in 2010-2011 with several rare autoimmune diseases. At that time, I started to research them. On some, I could hardly find any information. The AE that I was diagnosed with, Hashimoto’s Encephalopathy (HE), was the worst. I hunted down many patient sites to try to find one person diagnosed with this rare disease. I finally found one (my HESA co-founder). She and I started our crusade to help educate others diagnosed with HE. As the years went on, I became more involved with other rare diseases, and help to share information on all that need awareness.

Previous Career:  My previous careers include a clothing buyer and owning my own retail business. I had been a manager of retail establishments for more than 30 years until I had to retire because of disability. At that time, I started to take college courses for a new career I thought I would be able to continue with after retirement. But to my disappointment, because of my illnesses, I could not finish.

Education: Associate’s degree in medical office management/administration from Kaplan University, Des Moines Campus

Organization’s Mission:  HESA’s Mission is to offer support and educate patients, caregivers, and the medical world on this rare and under-diagnosed disease, HE. We also donate a percentage of our funding to the AEA towards their research on AEs. We educate the medical community, patients, and caregivers on HE by publishing the first two books ever written on HE. We have now expanded our efforts to include holding medical symposiums that educate medical personnel, caregivers, and patients. We had top experts in the field on autoimmune encephalopathy speaking last April at Weil-Cornell University. We filmed the entire event so that we could share the updated information with others.

Organization’s strategy:  We spread awareness through our website, social media, Facebook support groups, published books, and encephalitis conferences and symposiums. We join forces with other AE non-profits to give us more power to help people with autoimmune encephalopathy. If we cannot help someone, we try to find another group that can.

Funding Strategy:  HESA is funded by donations from our members. We also will apply for grants when we have a large project, such as a symposium or conference, and we get revenue from our book sales.

What’s changing at your organization in the next year: HESA has many projects for 2020, including a three-day conference that will be held in Dallas for Encephalitis Awareness Day in February. In March, we start to plan for our next symposium in conjunction with the AEA and Mount Sinai to be held in New York in the spring of 2021. We also have formed a new group to help parents with children transitioning to adult care, as this is a huge issue to the young adults, who can face a lapse in treatment and care while trying to find a doctor who knows their disease. We also have plans to create a brochure that is dedicated to parents of children with HE. This is a growing issue as more and more children are being diagnosed. We would like to help as much as we can. All our brochures are offered free to anyone who wants more information.

Management Philosophy:  I learned early in my career as a manager for more than 30 years that your employees learn by example. In HESA’s case, we are all volunteers, but the concept is the same. The volunteers’ ideas and feedback are important to me. HESA would never have come this far without the dedication from our volunteers. I treat everyone as part of our team. I try hard to earn the trust and respect of all our HESA volunteers by keeping things honest and open so that we can continue with our great HESA family.

Guiding Principles for running an effective organization:  As the executive director of HESA, I stay involved daily with any issues, problems, or member concerns that may come up. I am always available. I also do not expect any volunteer to do what I myself would not do. No one person is more important than another. We are all equals. Saying this, I realize that we each have different talents in areas that are important to the organization. We try to utilize those to make HESA thrive.

Best way to keep your organization relevant: We keep HESA relevant by keeping up on new research, scientific articles, keeping the members motivated, supporting them, helping them in any way we can. We also are constantly working on presenting symposiums or conferences to help educate medical professionals, patients and caregivers as this is the only way we will be able to help upcoming patients in the future.

Why do people like working with you: I believe it might be because of my patience, honesty, and understanding. Our volunteers know how much I appreciate all of them. They are all important to HESA and to me.

Mentor:  I like to give credit to all my bosses I have had in my life. I took something good away from all of them. My parents too, for teaching me the value of a good work ethic and honesty.

What Inspires You:  What inspires me the most is when I know HESA has helped someone, by either our books, symposia, videos, Facebook groups, or website. It lets me know that all of the hard work we all put into this daily is worth it. Just to help one person is such a rewarding feeling.

What makes you hopeful: The beginning of research on HE. It is the most misdiagnosed and misunderstood of all autoimmune encephalopathies. We have researchers right now beginning to study this form of AE. They have to find a cause to be able to help with treatment and hopefully prevention.

Best Organization decision: I feel the best organization decision that we made was to push forward with more aggressive educational tools that would help the medical world, patients, and caregivers. Being a small non-profit, it was a little bit scary, but we were determined to educate more people and we moved forward. That ended up being the best thing we could have done.

Hardest Lesson learned: The hardest lesson for me to learn as a cofounder and executive director of HESA was that I could not achieve everything at once. Being disabled myself with HE, and other rare autoimmune diseases, I needed to learn to pace myself as much as learn to pace HESA.

Toughest organization decision:  Many people do not realize that HESA is an all-volunteer organization. Most of our volunteers are disabled with HE, or they are caregivers for loved ones with HE or another AE. Being an all-volunteer organization, taking on a large project like the symposium or writing our books, is a scary and unsure thing. As people with HE, we become sick, we relapse, or the caregivers’ loved ones become sick again, delaying plans, and the organization of any event. We go through delay after delay because of sickness, tests, memory issues, treatments and so on. But HESA plugs on with the most dedicated bunch of volunteers I have ever met. Because of that, every large decision that we make at HESA is the toughest.

Biggest Missed Opportunity:  My inability to finish my college education because of my disability.

Like the best about the job:  The opportunity I have had meeting and making so many new friends across the globe.

Like least about the job: Not being able to work harder to get to more people that need our help.

Pet Peeve: When people are criticized for race, color, size, disability, or station in life.

First Choice for new career: Psychologist

Most influential book: I have to say it was a book on Myositis. When I was diagnosed, I hunted for a book of other patients’ stories. It was the foundation I used for our books that we wrote on HE.

Favorite Movie: A Walk in the Clouds

Favorite Food:   Popcorn

Guilty Pleasure:  Binge watching old series on TV

Favorite way to spend free time:  Without a doubt spending time with my children and grandchildren. They make everything right.


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