Inaugural ZMYND11 Awareness Day!
On October 15, 2026, we celebrate our inaugural ZMYND11 Awareness Day!!
What a milestone for the ZMYND11 Treatment Foundation and for all of those affected by ZMYND11-related disorders!
With the launch of our new brand last week, we are boldly re-introducing ourselves to the world to continue to raise awareness: Raise awareness among our friends and family, raise awareness within the medical world, raise awareness within the world of Genetics, highlighting who we are and what we do to other rare disease families walking similar paths. Perhaps most importantly, we are raising a flag and lighting a beacon so that newly diagnosed ZMYND11 individuals can easily find us, find out more about the diagnosis, find resources, and find community.
Since my son’s diagnosis, I have always jokingly commented that he is truly “one in a million”. The truth is, each of our ZMYND11 individuals are actually one in 41 million. There is no-one fighting their fight except for us; the families - We have to make our voices heard, and we are making great strides in doing just that!
This week I attended the Colorado Rare Disease Research Day & Research Fair. It was the first event of its kind here in Colorado and is expanding from three states in 2026, to seven states in 2027. While the turnout was far lower than I had anticipated (apparently the Research Day was intended more for medical professionals and pharmaceutical companies) I’m glad I decided to go. I wanted to just listen. See what I could find out, and, if given the opportunity, see who I could talk to for any and all information!
I left feeling pretty proud of our small but mighty ZMYND11 Treatment Foundation group! Of all the groups, foundations and diagnoses that I heard about from the various presentations, our Treatment Foundation is definitely one of the smallest out there in terms of affected individuals. Yet, we have a drug repurposing study underway! How amazing are we to have made that progress this year! Some of the bigger groups are still working towards this goal.
My main takeaway from the event was that there is so much hope in the world of genetics. Colorado is named as a leader in the field of Rare Disease research and some of our Genetic Counselors from Children’s Hospital Colorado were key speakers across the two day event.They already recognize and are fighting for increased and earlier access to genetic testing. They also recognize that it is the parents that are the most educated about the individual rare diagnoses and they want to support the families however they can - I asked if they would consider facilitating a day, or event, for Rare Disease families to get together and connect. We may not be within arms reach of someone else with the same diagnosis, but there is value in connecting with other families that truly ‘get it’.
I also emailed the event organizer afterwards. Knowing that this time next year the ZMYND11 Treatment Foundation will have results from our drug repurposing study - I want to tell our story and present it to a room of medical professionals. You never know, there may be just one person in the room that has the power and belief to help us go a step further and be our Champion!
~Kate Trombley
Mum to Ethan, 6yrs old, diagnosed with ZMYND11 at age 3