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  • Writer's pictureDeanna Lorianni

Meet Nancy — Co-Founder of DRESS Syndrome Foundation

Meet Nancy Szakacsy!

Nancy is Co-Founder of the DRESS Syndrome Foundation (DSF) and a global leader in DRESS Syndrome patient advocacy. She is essential to guiding our nonprofit’s mission and vision, and is passionate about supporting DRESS patients and loved ones. 

Each day, Nancy serves a key role in patient support, helping to advise patients toward effective medical outcomes. She further lends a supportive ear and heart to patients during what is often an emotional and difficult experience. Her loving spirit and go-get-em attitude motivate us daily.

Nancy’s advocacy work with the Foundation is one facet of her efforts. She is also creator and manager of the global Facebook group, The DRESS Syndrome Community, one of the most productive patient support communities. She also wrote the book, “Hannah Was Here: DRESS an alarm that must be heard.”

We owe much of our Foundation’s success to Nancy’s trailblazing advocacy work!

DSF: Why is it important that the DRESS Syndrome Foundation exists? 

Nancy: When I began this journey in 2011, DRESS was barely mentioned in medical journals. At the time, my 17-year-old daughter, Hannah, was experiencing a 102-day hospitalization with multiple organ failure from a common antibiotic (minocycline). Her DRESS case was only the 3rd one published in medical journals. I was in disbelief that such little knowledge existed on this horrific condition.

I knew more work had to be done to put DRESS Syndrome on the medical radar. So, I traveled to France to meet with Dr. Descamps, the French expert on DRESS. During this time I also wrote my book and started the Facebook group in hopes of connecting with other families during this isolating experience.

Fast forward to today’s work with the Foundation: Now, we’re working with the best and brightest researchers across the globe to better understand DRESS Syndrome. Through our efforts, we’re helping to bridge a lifesaving and critical medical gap for patients around the world. Further, I’m able to honor my daughter and the precious others lost to this preventable drug reaction. Along the way, we’re educating physicians and patients across 43 diverse countries by putting DRESS on the medical radar.

DSF: What do you appreciate about serving in this role?

The DRESS Syndrome Foundation is my heart’s greatest endeavor — a “pay it forward” to those who have yet to develop DRESS and those who continue to suffer. I appreciate that we’re moving things forward to a better understanding of DRESS Syndrome.

Through our efforts, we’ve:

  • Hosted a successful DRESS Syndrome global conference (the first of its kind!) and are preparing for our next conference in 2025

  • Attended and presented at national and global conferences, and have upcoming meetings in the works

  • Developed (and continue to foster) deep global relationships that combine knowledge, research, and patient involvement toward a united goal: eradicating DRESS Syndrome 

I couldn’t be more grateful to be a part of DSF and to work with my incredible partners. 

three woman stand in front of a painting smiling
Co-Founders Nancy Szakacsy (left) and Tasha Tolliver (right) stand with our DRESS Syndrome medical advisor, Dr. Elizabeth Phillips

DSF: What is something that inspires you in your work?

Nancy: The patients we help inspire me every day and the immense advocacy they and their loved ones must face. I admire how our DRESS Syndrome Community rallies for every new patient and offers stable ground during what can often be a tumultuous experience.

During my daughter’s DRESS case, I will never forget the feeling of racing panic and needing to know something and talk to someone who understood. The acute stage of DRESS is intense — watching loved ones suffer and become nearly unrecognizable with unimaginable set of presenting symptoms is agonizing. I'm so proud of how our patients advocate for themselves when no answers are present. Their strength and compassion keeps me moving each day.

We really need each other, to say the very least.

DSF: What interests do you have outside of DSF? 

Nancy: I have always had a deep love of the performing arts, music, and interpretive dance. My son, Samson (Hannah’s brother) is a songwriter, producer, and recording artist who is currently finishing a new album, “Syntropic Agroforestry.”Any chance I get, I'm grateful to be around songwriting, live music, and music production. The arts remain a constant source of comfort and creative expression in my life.

Further, my life's work has been in helping others to transcend suffering (and no doubt I apply the same understandings to self). I’m also a Licensed Marriage and Family therapist who’s been supporting individuals and families for the past 23 years. And for 12 years, I’m been a relationship expert treating PTSD, grief, and chronic illness.

In my free time, I love to spend time with my friends. You'll often find me driving down Pacific Coast Highway — the ocean always awakens in me a giant smile. 

DSF: Anything else?

With all the people in world to work with, I'm grateful to walk alongside my Foundation partner Tasha Tolliver. I’m further thankful to have in our journey a dedicated board, our Communications Director Deanna Lorianni, our Operations Advisor and Podcast Host Connie Stevens, and our Technology Consultant Christopher Smith.


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