There are many ways to be involved and help CURE SYNGAP1 in our mission to find a cure and support families living with SYNGAP1-Related Disorders (SRD). These are the four priorities we suggest to get connected to CURE SYNGAP1 & the community.
Connection
Your registration with CURE SYNGAP1 will put you in touch with the latest news and information and start you on your journey of discovering the passionate, supportive community which stands ready to help you with any questions you may have. Click here to connect.
Hold a Fundraiser
Science is not cheap. We need all families to raise funds to ensure we don’t miss out on any opportunity to find a treatment for our loved ones. You can start small (lemonade stand or garage sale), go social (Facebook Birthday Fundraiser), go big (hold a local or regional event), or participate in a global event (Sprint4Syngap). There are unlimited possibilities, all of which will help all of our families. It’s not too early to start. We have shared several ideas here. Other ways to give are here.
Volunteer
CURE SYNGAP1 is led by a dedicated, energetic and inspired group of volunteer parents, families, and even friends of those with SYNGAP1. The work of CURE SYNGAP1 includes, among many other responsibilities, connecting with scientists and reviewing/accepting grants; preparing blog and social posts, press releases, newsletters and podcasts; organizing conferences and webinars; and most importantly, advocating for all those affected by SRD. As our numbers grow and as more patients are identified, the volume of work required increases. Your involvement is crucial! Even if you only have one hour per week to give, it will help! Check out our volunteer page for more information.
Share Your Story
SYNGAP1-Related Disorders is not a well-known disease. In order to generate interest in research or solicit funds for that research, we all must spread awareness of this rare disease. CURE SYNGAP1 has many ways to help you do this:
- Warrior stories – tell your child’s story, and we’ll share it with the world. Contact allison@cureSYNGAP1.org for details.
- Write a blog – the content can be a day in your life, your experience attending a fundraiser, going to a new school, or anything that will help share with the world how SYNGAP1-Related Disorders impacts your life. Contact jo@curesyngap1.org to get started.
- Post on social media – this disease will not cure itself, and we cannot do it alone. Let the world know that we’re here, and we need help. Tag @cureSYNGAP1.org and let us repost your content.
- Contact local press – news outlets, television stations, magazines, etc. are always seeking intriguing content. If you’re not sure where to start, we have guidelines to help you.
- Make a movie – images of our lives are impactful! Movies are even more so, and they aren’t difficult to make. Our YouTube channel has all of our movies, webinars, and more for inspiration.
Advocate
If someone in your family suffers from SYNGAP1-Related Disorders, you are already an advocate. Whether it’s with their doctor, school, neighbors, or your own family, you’re looking out for their best interest and that of your family every single day. In addition to website resources, the CURE SYNGAP1 Advocacy Team, led by Jackie Kancir, coordinates efforts we can all make to help our loved ones.
- SRF Legislative Advocacy Efforts On Behalf Of Those Living With SYNGAP1
- Becoming a SYNGAP1 Advocate – Frequently Asked Questions and Resources
- Check our Calendar for other opportunities to Advocate on behalf of all Syngapians
Remember
The most important thing everyone can do regardless of whether you received your diagnosis last week, last year or ten years ago is to remember. Remember who we are trying to help – all of the Warriors out there, including the one(s) nearest & dearest to your heart.
