Hi AS families!
My name is Taylor Geathers. I am married to Kwame, and we have three children, Marlee, Nova, and Krew. Marlee is our almost 8-year-old angel! I am a senior Bachelor of Social Work student at Johnson C. Smith University in Charlotte, NC, interning at Another Chance House of Refuge, a transitional house serving the reentry population and the North Carolina Walk Coordinator for the Angelman Syndrome Foundation.
From Dec 2-3, I had the honor and privilege of attending the 2022 FAST Summit and Gala. This event was insightful and inspiring beyond belief. I sat in the ballroom of The Diplomat Hotel, listening to scientists, researchers, and doctors discuss the promising developments in AS research, steering full speed ahead toward the cure of our dreams. I looked around a room full of bright-eyed parents, guardians, loved ones, and even some AS individuals, and I could not help but notice the lack of diversity in the room. When I left Hollywood, Fl, I discussed how great the event was with my husband and my family. I told them about how this event had given me so much hope regarding a cure, but I could not shake the feeling that many families of color were not receiving the same hope. I wondered why. Could it be because people of color are being underdiagnosed or misdiagnosed, or are they not comfortable seeking out organizations like FAST?
I decided to reach out to Allyson Berent a couple of weeks after the Summit. I was nervous! Allyson was a Rockstar at the Summit and Gala, and I thought she would not have time for me. I was wrong! Allyson replied within minutes, and I was overwhelmed with emotions. I felt seen and heard. We set up a meeting with Alana Newhouse and Kelly David, and I could not ask for a more transparent and honest conversation.
So, here I am, given the ability to use my voice to reach out to my community and seek answers and solutions. To be candid, being an African American woman in spaces of great importance is not easy. It is scary. I understand the fear. But the reality is, when it comes to our loved ones, their health, quality of care, and their futures, we cannot allow fear to lead.
Marlee’s diagnosis came in 2016 at 19 months. I was 24 years old and had no clue what to do. I did not attend my first AS-related event until 2018. Marlee had her first AS-related seizure in May 2019. It was the morning of the ASF Walk, and we were attending in Chapel Hill, NC. Sitting in the ER, my husband and I contemplated if we should still go. Then, the ER doctor looked at us and said, what better place to be when faced with uncertainty than surrounded by people facing the same uncertainties?
I say all of this to say I am here. You are not alone. I want to be in every room and every space so that I can educate and advocate for my Brown Girl. It takes a village, and I am here to be a part of your village. Those reading this who may be a grandparent, aunt, or uncle of an AS individual, I encourage you to bring them into the fold.
The future is bright for the AS community, so let us close these gaps now so that when the time comes to administer cures, we can get them to every individual with AS who wants them.