McKee Data Webinar on Thursday! #SPRINT4SYNGAP in 4 days! The Emergency Plan, DSF Caregiver Connect, PGx, Cool Paper, Biorepository Collection! #S10e102 #DNAday

Webinars

McKEE 4/27 https://syngap.fund/mckee   - Ciitizen SYNGAP1 count is over 212

     - Sign-UP https://ciitizen.com/syngap1 

     - Sign-IN & Update https://app.ciitizen.com/  

SMITH 5/11 https://syngap.fund/smith LACOSTE 5/18 https://syngap.fund/lacoste

 

#Sprint4Syngap - 4 days, April 29, 2023

- $210k, 652 donors.

- https://syngap.fund/sprint 

- Fundraising page: https://syngap.fund/sprint23

 

What’s your neuro emergency plan? https://twitter.com/cureSYNGAP1/status/1646170843503034368

 

Caregiver Connect from DSF

Video modules are broken down into four important topics: Taking Care of the Caregiver; Caregiver Burnout; Communicating Emotions, Needs & Concerns; and Managing Grief. Each module offers multiple videos that you can watch on demand, as your schedule allows, as well as a coordinating tip sheet. If this resource would be useful to you or your community, you can find it at: - https://dravetfoundation.org/caregiver-resources/caregiver-connect/

 - aka https://syngap.fund/dsfcc 

 

Rare News Updates

1. PGx, just do it. 
   1. ​​https://www.nature.com/articles/s41397-020-00181-w
   2. Invitae
2. Killer paper overview on therapy types
   1. https://www.spectrumnews.org/opinion/q-and-a/the-future-of-autism-therapies-a-conversation-with-lilia-iakoucheva-and-derek-hong/ 
   2. https://www.nature.com/articles/s41398-023-02356-y 

 

#MDBRSRF - 46 days - June 10, 2023

syngap.fund/mdbr23

 

#SyngapConf - 219 days - book now, November 30, 2023

- Conf pre-registration link: Syngap.Fund/2023conf - Book hotels ASAP: https://syngap.fund/2023hotel 

 

Remember the Biorepository Roadshow - https://syngap.fund/roadshow 

List of biorepository collection opportunities, watch this webinar for more information see https://syngap.fund/TJB 

- MED13L Foundation on April 30th, 2023 (Philadelphia, PA)

- DYRK1A Foundation, June 23rd-25th 2023 (Bethesda, MD)

- KDVS Foundation, July 19th-21st 2023 (Orlando, FL)

- STXBP1 Foundation, July 21st-23rd 2023 (Westminster, CO)

- Yellow Brick Road Project, July 30th-August 2nd (Jacksonville, FL)

- (Potential) DUP15/Angelman, July 27th-29th 2023 (Nashville, TN)

- (Potential) KAND, August 3rd-6th 2023 (Queens, NY)

- (Potential) Global Genes, Sept 19th-20th 2023 (San Diego, CA)

- IRF2BPL Foundation, Sept 22nd-23rd 2023 (Cincinnati, OH)

- USP7/Prader Willi, Oct 5th-7th 2023 (Denver, CO)

- TBRS Foundation, Oct 12th-14th 2023 (San Antonio, TX)

- COMBINEDBrain Meeting, Oct 15th-16th 2023 (Washington DC)

- ADNP Kids Research Foundation, Oct 30th-Nov 1st (Los Angeles, CA)

- (Potential) Angelman Foundation, November 2023 (Orlando, FL)

- SYNGAP1 Research Fund, Dec 1st-3rd 2023 (Orlando, FL)

 

There is so much work to do, volunteer Info@SyngapResearchFund.org 

 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here 

- https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: 

https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818

Episode 102 of #Syngap10 - April 25, 2023 #DNAday

#biomarkers #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat