SRF Communications Coordinator Ed Gabler recalls going to the 1st SRF SYNGAP1 Family Conference in Nashville in 2022. Ed is Grandfather (Bapa) to Syngapian Cole and attended with Cole’s Mom, Ed’s daughter & SRF BOD member, Jess Fares. Should you consider coming to Orlando? We think you already know the answer, but read on for Ed’s advice.
To Go or Not To Go?
I’ll get straight to the point … if there is any way you can attend the 2023 SYNGAP1 Conference hosted by SynGAP Research Fund (SRF) in Orlando, DO IT!
There are plenty of reasons why, but I’ll recap just a few of the feelings I took home from Nashville. Nearly a year later, I still remember the experience as if it were yesterday. And yes, it was quite an experience!
You are Welcome!
When I decided to go to Nashville, I worried about stepping outside of my comfort zone. You see, I’m not a people person, but I soon found that my concern was wasted energy. From the moment we walked into the hotel lobby, we were met with warm greetings, hugs, and lots and lots of smiles. By the time I left for home, I was already looking forward to Orlando.
I drove 8+ hours from northern Ohio with my daughter to hear about the science and meet others in the SRF community. The majority of attendees were faces and names I knew only from the website. Despite being what I considered an ‘outsider’, not even a parent of a Warrior, I was treated like a longtime friend by everyone I met. As I looked and listened around the room, I knew others felt the same.
Science Day – Mind-Boggling Excitement
On the first day, twelve presentations outlined numerous avenues SRF is pursuing to cure our loved ones. Scientists & clinicians were all over the room asking for more details, most of which were far over my head. Admittedly, I felt like my brain would explode at the end of day one.🤯
What was not lost on me was the fact everyone was talking about SYNGAP1! Such excitement, the extent of the progress, and the sheer number of professionals thinking about & working for a cure gave me so much hope! They were talking about research that might one day provide treatment or a cure for Cole. I can’t remember a time in my life that I was so excited after hearing words I didn’t understand!
Finding a cure is the goal of every single family member. Finding a cure is the goal of SRF.
(As for my head exploding, I was able to decompress that evening at Nudie’s Honky Tonk.)🤠
Friendships – New & Renewed
Have you ever met anyone who immediately made you feel like family? That happened every time I met someone from arrival at the check-in desk, during the brief walk to the elevator, and throughout the entire two days. So many I had never met in person became family instantly.
In the past many months, I’ve become more involved with SRF as a volunteer and have worked with many who were there. I can’t wait to see you again! I’ve worked with many others who I didn’t have the chance to meet – I will make a point of seeking you out. As for new families, I’m looking forward to welcoming you as well so you can have a similar experience to mine.💙💚💜
Sharing – Stories, Tears, Laughter, and Lots of Advice
Before going, I would have thought that a gathering of 100+ rare disease caregivers might be depressing. There isn’t a cure. There aren’t reliable treatments for the symptoms. There’s an uncertain future facing every person in the room and family back home. Certainly, many of the stories brought tears as we opened up our hearts to each other, but through those tears, we were bound together more tightly.
Stories were shared around the table, in the hallway, at the honky tonk, and all day during Friday’s Caregiver Connect. SRF is a community of families who are going through a life none of us imagined. Despite the tears, despite our individual & collective SYNGAP1 journey, these dedicated parents showed extreme enthusiasm, optimism, and hope. It was contagious, embracing each attendee with a warm, reassuring hug.🫂
Inspiration in New Faces
I had never been around someone with a rare disease until Cole was born & diagnosed when he was 2-1/2. It wasn’t until Nashville that I was around someone other than Cole, and I found them to be inspiring. I exchanged a high-five with one very young man and held the hand of a young lady as we rode the elevator with her Mom. (I was warned that she might crush my hand, but that’s a very small price to pay for a connection I hope she felt as well.)
These small moments stuck with me and in the moment, reminded me of why I was there, and why I would travel to Orlando.
2023 Will Be Even Better!
While Nashville was a resounding success, the plan is to make Orlando even more family-friendly & fun. We hope to have SRF leaders available to help digest Science Day. (I could have used them last year!) There will be more breakout sessions & more time for families to ask questions of their peers. We have asked for, and will continue to request, your input on the agenda.
I will be there, and if you’re still not convinced whether it’s worth your time, review any of the links below, each of which, in its unique way, tells you why you should register now!
Special Podcast from Effie Parks (Once Upon a Gene) from Nashville