SRF launched a SynGAP Warrior Wednesday channel this year. We are writing this to let you know why we did it, where we got the idea, why we think it is a service to our community, and to encourage you to participate.
We do it to help people understand the size of our community and the range of our patients’ symptoms.
Doctors who have never seen a Syngapian before, parents who think your kid is odd, researchers in a lab reading about Syngap not able to put a face to this gene, other rare disease groups trying to figure out which patients are similar to theirs, that other Syngap family who hasn’t met another kid yet, that Pharma exec who is deciding to invest in Syngap…
All of these are the audiences for the WednesdayWarrior instagram channel. All of these people need to understand the range of severity of our patients, the progression of the disease and, most importantly, the heartbreaking beauty of our children. With only 406 diagnosed patients (when we wrote this) spread around the world, this channel is potent way to get to know each other and share our community with all our friends and partners.
We do it to help each other.
Parents who only live miles apart but were not aware of each other have connected because of these posts. Families in remote spots have been introduced the broader community after being profiled. One patient at a time, one week at a time, we get to know each other better. Almost by definition, rare disease communities connect online so these platforms help us “get to know” the kids we may never meet but care about so much. Parents who are newly diagnosed are eager for a chance to understand how things progress, to peek into their potential futures, the photos and videos of smiles, EEGs, hugs, horses, therapy rooms… all of it help to remind us we are not alone; we have a community.
We were inspired by giants in the rare disease community.
When we stood up SRF we looked for best in class organizations to model ourselves on, two are DSF the Dravet Syndrome Foundation and KIF1A.org. If you check out the DSF twitter feed or that of KIF1A, you can find numerous #WarriorWednesday tweets. The simple act of putting faces to these “rare” diseases help people connect with us and with each other.
Syngap1 patients are true warriors.
Merriam-Webster dictionary defines the word “warrior” as “a noun, often attributive — a person engaged in some struggle or conflict.”
Day in and day out, children and adults with Syngap1 are facing an immense struggle. They have a long list of diagnoses and even longer list of medications, supplements, and therapies. Here’s the catch, there is no cure. “Syngapians” as they are often called are the true warriors. The battle they are facing everyday could one day be diminished if a cure is found. How can we increase the likelihood of there, one day being a cure? Awareness.
What can parents of Syngap1 patients do to help?
If you would like to join the channel and share your patients smile and story with the world please contact us, either via the website or you can contact our Social Media manager directly at Deanna@curesyngap1.org.
Here is what we ask from you:
- 8–10 photos/videos (Instagram limits us to 10)
- A description of your warrior and their Syngap journey thus far, check out the existing ones in the channel for inspiration
- The location you want to share, it can be City, State or Country
- We ask for at least one of the photos to be of an EEG so that people are reminded our kids have a serious neurological condition
- Sign a photo release form
Finally, please remember to:
- Like us on Facebook to follow SRF
- Follow us on Twitter to keep up with our chatter with Scientists
- Donate to SRF via Paypal
- Sign up to our newsletter