Most people have never heard of SYNGAP1
SynGAP Research Fund’s primary focus is funding research to find a cure for SYNGAP1, and while the outlook for a cure is promising, it can’t come fast enough for our families. We can’t tackle this alone. We need the world to understand our plight, our lives, and our passion to help our loved ones who are sick.
Our community does everything we can to raise funds for research and to spread the word, but because SYNGAP1 is not a household word, we need everyone to introduce the outside world to our world. Here’s an easy way to do so….
Click. Click. Click.
It might seem like a small ask, a tap on your phone screen, or a flick of your mouse. But in the world of SYNGAP1 research, those clicks can create a ripple effect, a wave of awareness washing over potential donors and researchers, propelling us closer to a cure. We’ve listed more than 35 options in the bulleted list below for you to click to spread awareness!
Click on social media:
- Join SRF’s SYNGAP1 Global Community group. Connect with other families affected by SYNGAP1, share experiences, and offer support to others whose Syngapian is the same age, has the same mutation, or is on a similar medication regimen.
- Like, repost, share, and comment on all @curesyngap1 platforms (Facebook, X, LinkedIn, Instagram, Bluesky) to amplify our message.
- Tag SRF on posts you create. Make sure to adjust your settings so we can repost your content.
- Follow other SYNGAP1 families, researchers, doctors, and partners. Support one another, and our voice becomes louder so we can reach those who have never heard of us before.
- Share your positive experience with SRF by giving us a five-star rating online at GreatNonprofits.org.
Click on a video:
- Create a quick video featuring your Syngapian or family, and send it to SRF for us to post on TikTok.
- Watch and like a family movie on YouTube – perhaps you’ll be inspired to shoot your own film!
- Watch a SYNGAP1 family’s news spot! Do your own by reaching out to local media. Rare Disease Day (last day of February), SYNGAP1 Awareness Day (June 21), Sprint4Syngap, and birthdays are good dates to target your message.
- Share these videos and news clips with your family, friends, and community so they can better understand what living with SYNGAP1 is all about – so others can imagine what you’re going through every day.
Click on updates, webinars, podcasts, and links:
- Watch or listen to SYNGAP10, with SRF co-founder and Managing Director Mike Graglia. Keep up-to-date on what’s going on with SRF and SYNGAP1 research.
- Connect with families living with similar experiences with SYNGAP1 Stories. Listen to Ashley Frye’s latest guest share what their family has endured, how they cope, and the good times too.
- For our Spanish-speaking audience, listen to Merlina Dávila introduce us to the Latin American community of SYNGAP1. Her interview-based Café SYNGAP1 includes challenges they face, as well as the joy they find.
- Follow these excellent, distinct shows on any platform you choose, or subscribe to the SYNGAP1 Podcasts by SRF on our Apple Channel.
- Give a 5-star rating to all three shows and like every episode you hear. (See * below for how to rate and review on Apple.)
- Learn about the developing science behind our race to a cure – watch our webinars (including speakers at our SYNGAP1 Conferences in Orlando and Nashville) on our website or YouTube.
- Subscribe to and click on links in the SRF Newsletter.
- Click on Warrior Stories to meet other Syngapians and their families. Want to share your story? Contact Deanna@curesyngap1.org.
Every Click Counts!
Clicking absolutely improves the “ranking” for our shows, channels, and website, making it easier for the outside world to discover our SYNGAP1 world. We must click to educate the world about SYNGAP1, SRF, and our mission. The more people hear about our children’s lives, the more interest there will be in joining our cause. The more researchers hear about SYNGAP1, the more they will know how involved our families are and the more interested they will be to get involved.
Never give up hope: believe in the power of research, and remember that every click, every voice, every action expands our circle, which brings us all closer to a cure for SYNGAP1.
#SYNGAP1 #SynGAPResearchFund #SRF #SynGAPResearch #CureSYNGAP1 #ClickForSYNGAP1
*To give a 5-star rating and a review on Apple Podcasts:
- Open Show (not an episode)
- Several episodes will appear below the show image; scroll below to the Ratings & Reviews section and tap the “>” symbol to take you to the next page
- On this page, you can rate the show and write a review