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.
– 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
- PGx, just do it.
- Killer paper overview on therapy types
#MDBRSRF – 46 days – June 10, 2023
#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:
Episode 102 of #Syngap10 – April 25, 2023 #DNAday
#biomarkers #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
