Beata Tarasiuk - Part 2: CURE SYNGAP1 Volunteer talks about the SYNGAP1 Polska community, advancements toward a cure, inclusion, her Polish-language podcast, and her dream for us all.

Part 2 of host Jo Ashline's amazing chat with Beata Tarasiuk continues. Today, Beata shares her dream for all families living with SYNGAP1-Related Disorders as they dive deep into starting the Polish community, the importance of international collaboration and inclusion, volunteering for CURE SYNGAP1, and advocating for adult Syngapians. "There is hope for improvement! If the epilepsy stops, if they learn how to communicate better, if they entertain themselves, if they have more independent lives, then that's meaningful!"

Don't forget to watch Part 1 of this interview - Episode 39 and all other episodes are available at ⁠⁠⁠⁠⁠⁠⁠⁠⁠cureSYNGAP1.org/Stories⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠.

If you liked this episode, please give our podcast 5 stars!

⁠⁠⁠⁠⁠⁠⁠Kasia's Warrior Story⁠⁠⁠

Connect with Beata:

• ⁠⁠beata@cureSYNGAP1.org⁠⁠⁠
• ⁠⁠⁠Beata's CURE SYNGAP1 bio⁠⁠⁠
• ⁠⁠LinkedIn⁠⁠
• ⁠Beata's Podcast⁠

Other Episode Links:

• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CURE SYNGAP1 State Ambassadors⁠
• ⁠Get Involved with CURE SYNGAP1⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Volunteer with CURE SYNGAP1⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠The Benefits of Citizen: One Mom’s Story⁠
• ⁠First SYNGAP1 Family From Poland Goes To CHOP!⁠

CURE SYNGAP1 Poland:

• ⁠Website⁠
• ⁠Facebook⁠
• ⁠Instagram⁠

Connect with Jo:

• ⁠⁠Andrew's Warrior⁠
• ⁠jo@cureSYNGAP1.org⁠⁠⁠⁠⁠
• ⁠⁠⁠Jo's CURE SYNGAP1 bio⁠⁠⁠⁠⁠
• ⁠⁠⁠Instagram⁠⁠⁠
• ⁠⁠Jo's personal blog page⁠

CURE SYNGAP1 & SYNGAP1-Related Disorders Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

• CURE SYNGAP1 fka SynGAP Research Fund⁠⁠ (SRF)
• ⁠⁠⁠⁠⁠⁠What are SYNGAP1-Related Disorders?⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠How Many People Have SYNGAP1?⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 Resources for Newly Diagnosed Families⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Donate to CURE SYNGAP1⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠CURE SYNGAP1 Brochure⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CURE SYNGAP1 Fundraising Resource Page⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Wednesday Warriors⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Supporting SYNGAP1 Siblings⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 & Epilepsy⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠Addressing the Symptoms of SYNGAP1⁠⁠⁠⁠⁠⁠
• ⁠⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CURE SYNGAP1's Medical Considerations Document⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

SYNGAP1 Studies and Trials:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

• ⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 Studies⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 ProMMiS⁠⁠⁠⁠⁠⁠⁠⁠⁠ – Prospective Multidisciplinary, Multisite Study for Clinical Excellence: CHOP, CHCO, Stanford
• ⁠⁠SYNGAP1 ⁠⁠⁠Clinical Trials⁠⁠⁠⁠⁠

Connect with CURE SYNGAP1 (@cureSYNGAP1):

• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠YouTube⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠X/Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
• ⁠CURE SYNGAP1 Podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠w/ Mike
• CURE SYNGAP1 ⁠⁠⁠⁠⁠Apple Podcast Channel⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

⁠Syngap Global Network⁠

Comments: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ed@cureSYNGAP1.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay⁠⁠

Episode 040 - Part 2 SYNGAP1 Stories, March 16, 2026

#SYNGAP1StoriesKasia #Syngap #SYNGAP1 #CureSYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp40 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #CureSYNGAP1Conf #SYNGAP1Siblings #Caregiver #Behavior #Communication #Volunteer #CureSYNGAP1Conf26 #Therapy #SYNGAP1Poland #SyngapPolska ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠#CitizenHealth #SyngapGlobalNetwork