How is the podcast doing?
- Episode 1 - 93 in ciitizen, 750 patients, on our first Sprint… https://youtu.be/aGDEc8Uwy-k
- Episode 100 - 212 in ciitizen, 1,215 patients, on our 3rd Sprint!
What you can do this week?
- Take the education survey https://forms.gle/YZJZmJavMNKNEBg88 and consider joining our advocacy group.
- Tell me if you have any GI biopsies planned.
- Plan your travel
- Biorepository Roadshow - See end of shownotes or https://docs.google.com/presentation/d/1Ps3n6f62yQ9lMEsON-vbgvyOKiO8TohawZcUByxVg8g/edit?usp=sharing
- Annual Conference - Preregister Syngap.Fund/2023conf
Any great press?
- Polancos on TV https://twitter.com/cureSYNGAP1/status/1643967039214850048
- Fosters in the KC Star https://twitter.com/cureSYNGAP1/status/1643357789966704643
- Axonis/Tang Grant https://twitter.com/cureSYNGAP1/status/1643602756375298048
Rare News Updates
- ONCE UPON A GENE - EPISODE 181 - Helping Undiagnosed Patients Who Experience Symptoms of Rare Disease Lukas Lange is the CEO and Founder of Probably Genetic. https://twitter.com/OnceUponAGene/status/1644079452211798016
- Angelman Training for ASOs - https://twitter.com/cureSYNGAP1/status/1643768256468238336
#Sprint4Syngap - 21 days, April 29, 2023
- Fundraising page: https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023
#MDBRSRF - 63 days - June 10, 2023
#SyngapConf - 236 days - book now, November 30, 2023
- Conf pre-registration link: Syngap.Fund/2023conf
- We have signed with a hotel/venue, please stay tuned for room link
- Large Latin Contingent too, just another this morning.
List of biorepository collection opportunities, watch this webinar for more information https://www.syngapresearchfund.org/webinars/74-combinedbrain-biobank-our-partnership-with-srf-for-syngap1
- 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)
- SLC6A1 Connect, Dec 1st-3rd 2023 (Orlando, FL)
There is so much work to do, volunteer [email protected]
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here
- https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts:
Episode 100 of #Syngap10 - April 8, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Send in a voice message: https://podcasters.spotify.com/pod/show/syngap10/message