Dive in to SynGAP Advocacy in 2020! Yes You.
FEBRUARY 17, 2020
Mike is the Managing Director of SRF.
To: Every #Syngap Parent, Grandparent, Aunt, Uncle, Adult Sibling & friend
Re: Wish you were here.
Team SRF at AES last year. Aside from hosting a successful event we planned for 2020 and enjoyed working together in person for a change.
Ever since we created SRF I have been struck by so many things, but here are three. First, when I meet parents they all want to know what is going on — what I learned at the last meeting. Second, when I go to these meetings and conferences the majority of attendees from other disease groups, universities and companies are eager to connect and share information. Third, when I encourage parents to come to all these events they seem surprised.
And here’s my point, you don’t need a business card from an organization to show up at a Rare Disease event. When you show up, you set yourself up to learn and teach. You can learn about what advances are exciting people right now, what groups are paving the way and who is a real collaborator. You will teach people about Syngap, about our patients and how much this disease changes the life of patients and families. It is all good.
If you are waiting for a sign, this is it.
So, if you are related to a Syngapian, or just really care about one, and you want to know what is going on, what can you do? There are a few things. Certainly follow SRF, read our blog and support our work, and also come to something. Here’s a list of what we are tracking in 2020. We’ve put a check next to things we know we will be attending/have attended, please reach out and let us know you are coming. We enjoy tremendous fellowship at these things and we’d love to meet you.
UPDATE: The below is a list of events that was made before COVID-19. It’s out of date, but there are still two events you can go to in 2020…
Don’t miss Global Genes Live, Sept 15 to 25. It’s online and it’s free. Register and use code GGLIVECOMP to pay. During registration you get an inspiring list of sessions. Take some!
We will also be doing the second annual SynGAP Roundtable this year, stay tuned.
SRF Leaders at Global Genes 2019.
Here’s the list of opportunities to learn and teach:
- January 14, San Francisco. 🇺🇸 Rare in the Square at the JPM Healthcare Conference. Organized by Global Genes. ✔️
- 4, Houston, Texas. 🇺🇸 Data DIY Session 4. Organized by Global Genes with support from CZI. ✔️ FB post & Livestream.
- 19–21, Novato California. 🇺🇸RARE Entrepreneur Bootcamp. ✔️ 👍
- 24–28, Washington, DC. 🇺🇸 Rare Disease Week on Capital Hill. ✔️ Blog post.
- 3, online. FDA meeting on Bespoke Therapies.
- 12–14, Santa Clara, California. 🇺🇸 2020 Epilepsy Pipeline Conference & Community Day organized by the Epilepsy Foundation. ✔️ Postponed due to Coronavirus 👑🦠
- 14, Irvine, California. 🇺🇸Family meet-up. Organized by SRF, contact us for details. 👍
- 23–24, Austria. 🇦🇹 Syngap Symposium, Vienna. Organized by Leon & Friends, the Austrian part of SGN. Cancelled due to Coronavirus 👑🦠
- 28, Raleigh, NC. 🇺🇸 #RAREontheRoad from Everylife & Global Genes. 👍Cancelled due to Coronavirus 👑🦠
- 13–15, Maryland. 🇺🇸Curing the Epilepsies at NIH. ✔️Postponed until January 4–6, 2021 due to Coronavirus 👑🦠
- 17, Burlingame, CA. 🇺🇸 #RAREontheRoad from Everylife & Global Genes. 👍Cancelled due to Coronavirus 👑🦠
- 18, Novato, California. 🇺🇸Rare Family Day, hosted by Ultragenyx. 👍 Cancelled due to Coronavirus 👑🦠
- 26, Spain. 🇪🇸Syngap España, the Spanish part of SGN, running the Madrid Half Marathon.
- 14–16, Ohio. 🇺🇸 NORD Patient & Family Forum.
- 18, NYC. 🇺🇸 Rare Disease Film Festival 2020. Don’t miss this. ✔️ 👍
- 30, Minneapolis, MN. 🇺🇸 #RAREontheRoad from Everylife & Global Genes. 👍
- 30–31, Australia. 🇦🇺GETA Conference. TBD 👍
- 6–7, Edinburgh, Scotland. 🏴UK Meetup. TBD
- 11–12, Philadelphia. 🇺🇸 RARE Drug Development Symposium organized by Global Genes & the UPenn Orphan Drug Center. ✔️
- 13, Philadelphia. 🇺🇸Million Dollar Bike Ride: Syngap Fundraiser Bike Race at University of Pennsylvania. We have spots on our team if you like to ride! ✔️ 👍
- 21, Global. 🌎Syngap Awareness Day #Splash4Syngap. Online event. ✔️👍
- 21, Hendaye, France. 🇫🇷 Surfing in partnership, organized by Virginie in partnership with Syngap España & Lehena ecole de surf. ✔️👍
- 27, New Orleans, LA. 🇺🇸 #RAREontheRoad from Everylife & Global Genes. 👍
- July 26, San Francisco, California. 🇺🇸 SF Marathon / Ultra Relay! Aaron & Ashley are running, & recruiting participants. ✔️
- September 21–23, San Diego, California. 🇺🇸 RARE Patient Advocacy Summit organized by Global Genes. ✔️ 👍
- 3 & 4, Madrid, Spain. 🇪🇸Family meetup organized by Syngap España, the Spanish part of SGN.
- 8–9, Washington, DC. 🇺🇸 NORD Rare Diseases and Orphan Products Breakthrough Summit ✔️
- TBD, NYC. 🇺🇸 Syngap Research Fund Gala: October. ✔️ 👍
- November 19, Maryland. 🇺🇸 Family meetup at FDA. ✔️
- December 4, Seattle, Washington. 🇺🇸 2nd Annual Syngap Roundtable @ AES. organized by SRF the US part of SGN. ✔️👍
👍 = our strong endorsement
✔️ = SRF was or will be at the event.
TBD = SRF may be at the event.
If there is an event you think we should add for 2020 or 2021, please contact us!
All SRF attendance at these events is paid for either by scholarships from the event, the families who attend or SRF. When costs are covered by SRF, they are covered by our Founders’ overhead grant, which pays for 100% of all overheads, this ensure that all donations to SRF go directly to research.