Emily Gerst, Vice President
Family Engagement Committee Chair ● Welcome Coordinator ● Parent of Cecilia, age 10
emily@skdeas.org
“When you have a rare disease, you face two battles. One being the illness itself, and the other, living in a world where so few people understand what you’re up against.”
Receiving Cecilia’s genetic testing results back in May 2020 and the days that followed left a profound impression on me as a parent. During that overwhelming time, being warmly welcomed by families all across the world within the WDR26-Related Diagnoses group on Facebook was the lifeline I so desperately needed.
Since Cecilia’s diagnosis, I’ve seen our community continue to grow, and I’ve witnessed the unmatched support that our families offer to one another day after day. While there are clearly many differences to be found across our diverse community, the Skraban-Deardorff syndrome diagnosis connects our families in such a unique and irreplaceable way. As the formation of the SKDEAS Foundation became a reality, we knew we wanted to find ways to channel energy back into our community through the work of our new nonprofit.
Within our first few months of operation, I enthusiastically offered to be the face behind welcome@skdeas.org as our welcome coordinator, striving to strengthen that essential lifeline for newly diagnosed families; then a short time later, I founded the family engagement committee, in an effort to better support our families along their Skraban-Deardorff syndrome journey. As the work of the family engagement committee continues to evolve, we are dedicated to encouraging strong relationships among SKDEAS families and keeping us all connected to the work of the SKDEAS Foundation and our medical professionals.
Professionally, I am a private piano and music theory instructor, working with students ranging from children as young as age five through retired adults. Throughout my career, I have witnessed the plentiful musical and non-musical benefits private instruction offers. The positive impact music makes on the neurodiverse population is wildly fascinating to me and continues to strongly influence my work.
In addition to teaching in my music studio, I can be found collaborating with special education stakeholders in my local school district and at the Wisconsin state level as a District Family Engagement Liaison, a family and educator support position through the Wisconsin Statewide Parent Educator Initiative. Most notably, our family engagement team offers peer support for families, provides access to high quality training resources for families and educators, and creates connections to local organizations and services, all to improve the educational experience for each student with an IEP.
It’s been an honor to build relationships with so many SKDEAS families. If we haven’t met yet, I’d love an introduction to you and your family–Please reach out any time. May we all continue to grow together for many years to come!