You cannot do a kindness too soon because you never know how soon it will be too late.
— Ralph Waldo Emerson

December 1, 2021

Dear Friend of SRF,

Join us online this Friday for the 3rd Annual Synapse Roundtable, details below.

TeamSRF is growing and doing great work.  Did you see the volunteer video with a few of us that came out yesterday? If you want to be a part of our volunteer team, please reach out.

In spite of a challenging year, we have managed to fund major grants, support an ever growing number of patients, engage with industry/researchers and raise essential funds to make this work happen.  I can tell you that 2022 will be an incredible year based on all that I'm seeing. 

In this last month of the year we turn our attention to fundraising so that we can fund more research in the new year.  If you are able to be generous, please include SRF in your end-of-year giving.  100% of funds go to science since the founders absorb all overhead/operational costs.  Every donation brings us closer to a better future for our loved ones.

See you Friday at the Roundtable.

Time is brain,

Mike

Tony's Dad & Managing Director of SRF 

 

The 3rd Annual Roundtable is this Friday

We get more done when we work together. That is why we expanded our annual research roundtable to focus on collaboration with two other Rare Disease groups we respect: STXBP1 Foundation and Cure SHANK.  We will hear from seven speakers who each work on at least two of our three genes.  The meeting is virtual and free, please join online to hear the latest.  Here is the schedule, all times Central.

Start time - Speaker - Institution - Topic
8:00 - Dr. Bichell - COMBINEDbrain - Cures happen faster when unique disorders find strength in collaboration
8:20 - Dr. Dallman - Miami - Sensorimotor integration in gut and brain of zebrafish Syngap1 and Shank3 models
8:40 - Dr. Kolevzon - Mt. Siani - Clinical Trail Readiness Endpoints and Outcomes
9:00 - Dr. Smith-Hicks - Hopkins - Sleep & other potential biomarkers for SHANK3 & SYNGAP1
9:20 - Dr. Chung - Simons - Simons Searchlight Registry Insights
9:40 - Elli Brimble, CGC - Ciitizen - Ciitizen Registry Updates on SYNGAP1 & STXBP1
10:00 - Dr. Prosser - UPenn - Antisense olligonucleotide therapies for STXBP1 & SYNGAP1 disorders

 

Year-end giving is in full swing

There is still time to support our GivingTuesday Fundraisers on GiveLively and Facebook.

Have you ordered your Holiday Cards from Minted yet?  Use this code at Minted.com to get 20% off AND have 15% donated to SRF! Code: FUNDRAISESYNGAP

SRF could not achieve as much as we have for SYGNAP1 patients without a strong team of volunteers. This video is a chance to meet them and understand who you are supporting when you give to SRF.

 

SRF Merch is quality!

Last chance to get your Wild Type gear on Bonfire. Only 3 days left!

We also have great new merchandise in our store.

 

Why Wild Type?  Read about the term on Wikipedia.  It is how scientists refer to the "normal" version of something.  So our patient have a mutated and "wild-type" version of SYNGAP1.  Many of us refer to our non-SYNGAP1 children as "Wild Types."  You have three days left to buy one of these great hoodies!

 

Get more merch! We have lots of designs in the SRF store that are made to order. Remember, we thank you with SRF Store gift codes when you raise for us via Facebook Fundraisers. For every $250 you raise, you earn $25 in SRF store credit!

 

SRF is recruiting for three SYNGAP1 Studies

Neuro Evaluation Tool Development for SYNGAP1

Understanding Rare Genetic Epilepsies in Adults

 

Join the Ciitizen Study by December 15th

Ciitizen extended our recruitment deadline for Cohort 3 of the SYNGAP1 Digital Natural History Study and we are so close to filling every space. Patients who join this cohort this month will be included in the next data share to researchers in 2022.  Help us advance science by joining this study! Sign up at ciitizen.com/SYNGAP1

 

Diversity, Equity & Inclusion 

El Fondo de Investigación de SynGAP is hosting an Americas Family Meeting en español January 21-23 in San Diego.

Registration deadline is December 15.  Register here.

These are the speakers we have lined up: 

 

Nancy, Vicky & Alexis at Global Genes

Three SRF members attended the Global Genes Health Equity and Diversity Summit in Philadelphia.  They connected with great and inspiring people while developing goals which will drive future changes.  Alexis Edouard, Nancy Kessler and Vicky Arteaga (FondoSyngap.org)  represented SRF and the SYNGAP1 community.  Nancy was a moderator and panelist in "Challenges of Rare Adult and Older Patients.” They attended the Champions of Hope Awards Ceremony honoring special contributions to the Rare Disease world.

If you want to join the DEI team, reach out to Vicky or Alexis.

 

Crypto Corner

  • You can donate thirteen different cryptocurrencies now via The Giving Block!
  • Thanks to Jack Shi for this Unlock DeFi Interview and for sharing a portion of his proceeds with SRF.
  • Check out the Sunblocks SunGap Initiative via the picture on the right. All proceeds go to SRF!
 

SRF in the News

 

Brain Donation

We were recently asked by a family, “When my loved one passes, how do I donate their brain to science?” We did a ton of research, spoke to multiple options and a number of other rare disease groups... this was an important decision and we wanted to get it right. We are proud to announce that we have partnered with Autism BrainNet and we encourage our families to learn about them.

 

 

Are you following SRF's TikTok?

Go subscribe to SRF's TikTok channel! SYNGAP1 mom Ashley Frye creates some great content. Submit videos and ideas to Ashley via email. 

 

Get to know 141 SYNGAP Warriors

Today we published beautiful Mya from Canada.  Each of these posts have a story and more photos on our site.  If you have not discovered this collection, treat yourself to some beautiful smiles today.  Families, submit your story here to make sure your warrior is included.

 

Are you subscribed to the SYNGAP10 podcast?

You're busy. There's too much going on. How are you supposed to keep track of all this SYNGAP1 progress? Subscribe to the SYNGAP10 podcast on Google, Apple, Spotify, Amazon, Stitcher, etc. Let us keep you up to date. We are 37 episodes in! So if you are just joining us you can catch up in 5.5 hours!

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