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Jackie Kancir

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IDD Health Matters
IDD Health MattersEp 123: Jackie Kancir Pushes Policy and Integration for People with Profound AutismJackie Kancir, a lifelong patient and policy advocate and current Policy Director for the National Council on Severe Autism, discusses her work to improve health equity and services for individuals with profound autism and intellectual disabilities. Speaking at the American Academy of Developmental Medicine and Dentistry conference, she highlights challenges such as the "cliff" faced when individuals age out of pediatric care, the need for integrated health systems, and her efforts to amend the Autism CARES Act and implement mandatory hospital protocols for safe care. Drawing from personal experience as a mother to a 21-year-old with profound autism and...
2025-11-2410 minCURE SYNGAP1 PODCAST aka SYNGAP10
CURE SYNGAP1 PODCAST aka SYNGAP10Clinical Research, AI Dx, #NL47, Survey, #Autism Press, 6 Days to Register for #SYNGAP1conf #S10e187Saturday, October 25, 2025. Week 43.   Time to advocate, ELF on the Hill, support available, apply now: https://www.linkedin.com/posts/everylifeorg_were-excited-to-join-everyone-on-capitol-activity-7384625926333943808-mO1U/   PUBMED at 47, and low. Clinical research! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.2025-2025&sort=date   - CHOP EEG ProMMiS ​​https://www.neurology.org/doi/10.1212/WNL.0000000000214148?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed - COMMUNICATION #ORCA https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.70063   Doing surveys...
2025-10-2509 minFinding Common Ground
Finding Common GroundNational Council on Severe Autism: Driving Change with Jackie Kancir and Tammy SnyderIn this powerful episode, Heather and Steve sit down with Jackie Kancir, Executive Director of the National Council on Severe Autism (NCSA), and Tammy Snyder, New York State Chair for NCSA—two incredible women who live the reality of severe autism every single day and fight to make a difference far beyond their own families. “We didn’t choose this path—but we’re choosing to walk it with purpose, for every family who feels unseen.” – Tammy Snyder “There’s a whole population of individuals being left out of the conversation. We’re...
2025-04-071h 02SynGAP10 weekly 10 minute updates on SYNGAP1
SynGAP10 weekly 10 minute updates on SYNGAP1#SRFadvocates, #ColinFarrellFoundation, Adult Advocacy & the Best Science Team Ever #S10e147📝Full show notes: https://syngap.fund/n147  FDA Talk this week!  Thank you Beacon! https://syngap.fund/fda24    SRF ADVOCACY - Don’t miss the chance to beef up your advocate muscles, after we get through FDA, the fun has just begun.  JK & JJ are amazing.  https://curesyngap1.org/team/leadership-team/jackie-kancir/  ADULT ADVOCACY SRF & UBC: https://curesyngap1.org/adults-with-syngap1-caregiver-resources/ also /Adult Interview: https://www.youtube.com/watch?v=JDiD8Z3lWQkFoundation: https://colinfarrellfoundation.org/ WaPo Article...
2024-08-1220 minCURE SYNGAP1 PODCAST aka SYNGAP10
CURE SYNGAP1 PODCAST aka SYNGAP10#SRFadvocates, #ColinFarrellFoundation, Adult Advocacy & the Best Science Team Ever #S10e147📝Full show notes: https://syngap.fund/n147    FDA Talk this week!  Thank you Beacon! https://syngap.fund/fda24      SRF ADVOCACY - Don’t miss the chance to beef up your advocate muscles, after we get through FDA, the fun has just begun.  JK & JJ are amazing.  https://curesyngap1.org/team/leadership-team/jackie-kancir/    ADULT ADVOCACY SRF & UBC: https://curesyngap1.org/adults-with-syngap1-caregiver-resources/ also /Adult Interview: https://www.youtube.com/watch?v=JDiD8Z3lWQk Foundation: https://colinfarrellfoundation.org/ WaPo Article: https...
2024-08-1220 minCURE SYNGAP1 PODCAST aka SYNGAP10
CURE SYNGAP1 PODCAST aka SYNGAP10SRF is a “Get-to…” not a “Have-to..”  Do something & Go big.  #S10e139SRF is a “Get-to…” not a “Have-to..”  Do something & Go big.  #S10e139 Talking with John Get vs Have (https://www.youtube.com/watch?v=J5oBo9zcRUE) SRF is the same: - Raise Funds to Change the Future - Volunteer, contribute to a larger effort - Connect with other families - Share our experience to make broader knowledge - Learn from each other and scientists Raise Funds #Sprint4SYNGAP 2024 syngap.fund/sprint24 - https://givebutter.com/ALjJXJ  - Newsletter https://mailchi.mp/curesyngap1.org/sprint4syngap?e=8531ca92fd ...
2024-04-2417 minSynGAP10 weekly 10 minute updates on SYNGAP1
SynGAP10 weekly 10 minute updates on SYNGAP1SRF is a “Get-to…” not a “Have-to..” Do something & Go big. #S10e139Talking with John Get vs Have (https://www.youtube.com/watch?v=J5oBo9zcRUE) SRF is the same: - Raise Funds to Change the Future - Volunteer, contribute to a larger effort - Connect with other families - Share our experience to make broader knowledge - Learn from each other and scientists Raise Funds #Sprint4SYNGAP 2024 syngap.fund/sprint24 - https://givebutter.com/ALjJXJ - Newsletter https://mailchi.mp/curesyngap1.org/sprint4syngap?e=8531ca92fd
2024-04-2417 minSynGAP10 weekly 10 minute updates on SYNGAP1
SynGAP10 weekly 10 minute updates on SYNGAP1#RareOnTheHill and #SRFboard in DC were epic.  It’s going to be a great year. Get some #RareBrewCoffee! #S10e135DC was epic, come next year! - Board Meeting and Leadership Team. - Rare on the Hill - Nancy, John, Vicky, Kathryn, Marta, Suzanne, Jess Johnson!   https://www.facebook.com/suzanne.v.jones/posts/pfbid02pMjKxryjDej62FM2RRA6afyU5JPkdB37dXzVrXMLFzjsWmRTQV2wtR3BNaaFcTK4l - Last week of Feb, don’t miss it. #RareBrewCoffee has launched! https://rarebrewcoffee.com/ use code SRF10 Reflecting on the latest Rick Huganir paper - This was in part supported (as acknowledged) by o...
2024-03-0519 minCURE SYNGAP1 PODCAST aka SYNGAP10
CURE SYNGAP1 PODCAST aka SYNGAP10#RareOnTheHill and #SRFboard in DC were epic. It’s going to be a great, year, get some #RareBrewCoffee! #S10e135DC was epic, come next year! - Board Meeting and Leadership Team. - Rare on the Hill - Nancy, John, Vicky, Kathryn, Marta, Suzanne, Jess Johnson!   https://www.facebook.com/suzanne.v.jones/posts/pfbid02pMjKxryjDej62FM2RRA6afyU5JPkdB37dXzVrXMLFzjsWmRTQV2wtR3BNaaFcTK4l - Last week of Feb, don’t miss it.   #RareBrewCoffee has launched! https://rarebrewcoffee.com/ use code SRF10   Reflecting on the latest Rick Huganir paper - This was in part supported (as acknowledged) by our first...
2024-03-0519 minSYNGAP1 Stories
SYNGAP1 StoriesJackie Kancir, SYNGAP1 Mom and Advocacy Leader for SRF talks about daughter Jadyne and shares advice for all rare disease parents.Show Notes In this special episode, guest host Jessica Johnson talks with Jackie Kancir. The two SYNGAP1 Moms discuss education systems, on the farm with Jadyne (Jackie's daughter), make-up, behavioral issues, Jadyne's optimism, and advocating for your children! This episode will educate everyone in the rare disease world. Behavior is communication - listen for details! See all episodes at ⁠⁠⁠⁠⁠Syngap.Fund/Stories⁠⁠⁠⁠⁠. ⁠Jadyne's Warrior Story⁠⁠ Connect with Jackie: jackie@curesyngap1.org Jackie's SRF bio ⁠⁠⁠LinkedIn Other Links SRF SYNGAP1 Resources for Education & Advocacy SYNG...
2024-03-0343 minLet\'s Talk Tennessee
Let's Talk Tennessee009 - Let's Talk Tennessee===========================Summary===========================A preview of priority focus areas of the 113th General Assembly Session that reconvenes next week.This week’s “What The” Corner is about emergency transport for behavioral crises.   ===========================Timestamps===========================Intro 0:08Advocacy Webinar 0:27113th General Assembly 1:44School Vouchers 2:00Family Caregiver Pay 2:58Parity 3:20“What The” Corner 6:32 ===========================UPCOMING WEBINAR SPEAKERS===========================Jackie Kancir, Exploring Advocacy: Finding and Refining Your Voicehttps://www.tnncsa.org/events/voiceSunday, January 7, 20245pm CST / 6pm EST...
2024-01-0609 minLet\'s Talk Tennessee
Let's Talk Tennessee008 - Let's Talk TennesseeHear a recap of last week's webinar and look ahead to two new webinars coming in January. Our website has new advocacy tools available for you, and the NIH is asking for public comment on autism and co-occuring conditions. Finally, Jackie rounds out this week's episode with a new policy corner called "What The?". Is ECF Choices funding being used properly? =========================== Timestamps =========================== Intro 0:08 Webinar Review 0:23 Parity 1:14 Advocacy Tools 1:53 Action Campaign 2:02 Letter Template 2:23 Advocacy Webinar 2:57 Catatonia Webinar 3:55 NIH Public Comment 4:14 New Policy Corner 6:00 What The? 6:52
2023-12-3111 minLet\'s Talk Tennessee
Let's Talk TennesseeLet's Talk Tennessee TrailerHost: Jackie Kancir, State Chair, TN Chapter of National Council on Severe Autism National Grassroots NetworkSummary: This is your weekly podcast where we discuss news, policy, and advocacy for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.The world needs your voice, and we are here to help you become a better informed and effective advocate for Tennesseans who have been underserved and underrepresented for far too long.Hit subscribe and stay up to date each week on the matters impacting your family...
2023-12-3100 minSYNGAP1 Stories
SYNGAP1 StoriesMike Graglia, SRF Managing Dir. & SYNGAP1 Dad to Tony. Going back to school can be difficult. Tony's experience shows that it's so much harder for kids with SYNGAP1!Show Notes Going back to school is difficult for most kids and their families, but for those living with SYNGAP1 and other rare diseases, it is especially hard! Mike Graglia, SRF Co-Founder & Managing Director and Dad to Syngapian Tony, joins Ashley again to talk about a crisis his family experienced on Tony's first day at a new school. It's easy to talk about the joy we experience with our special kids, but it can be gut-wrenching to discuss (and hear about) the hard days. That makes it so important to share these stories - to make sure...
2023-08-3051 minSynGAP10 weekly 10 minute updates on SYNGAP1
SynGAP10 weekly 10 minute updates on SYNGAP1So much news, double catch up episode. #S10e111*Note, we are aware part of the video froze; that’s life!  RESEARCH! - Dr. Helbig gave a killer presentation today… at Stanford.  It was so cool to see SYNGAP1 mentioned. “Deciphering the Epilepsy Phenome – Understanding Longitudinal disease trajectories and outcomes” it showed how much data you can get form EHRs, ciitizen and NHS.  We need them all.  Sign up for Ciitizen!  https://www.ciitizen.com/SYNGAP1/ - SRF Supported work out of Huganir’s Lab is on BioRx! https://www.biorxiv.org/content/10.1101/2023.08.06.552111v1.full.pdf - Grants due on 9/1...
2023-08-1223 minCURE SYNGAP1 PODCAST aka SYNGAP10
CURE SYNGAP1 PODCAST aka SYNGAP10So much news, double catch up episode. #S10e111*Note, we aware part of the video froze; that’s life!    RESEARCH! - Dr. Helbig gave a killer presentation today… at Stanford.  It was so cool to see SYNGAP1 mentioned. “Deciphering the Epilepsy Phenome – Understanding Longitudinal disease trajectories and outcomes” it showed how much data you can get form EHRs, ciitizen and NHS.  We need them all.  Sign up for Ciitizen!  https://www.ciitizen.com/SYNGAP1/ - SRF Supported work out of Huganir’s Lab is on BioRx! https://www.biorxiv.org/content/10.1101/2023.08.06.552111v1.full.pdf - Grants due on 9/1, already se...
2023-08-1223 minThis Is Nashville
This Is NashvilleThe cost of disability and chronic illnessGiving birth costs an average of $18,885 nationwide before insurance. If you have a medical emergency, you can expect to spend hundreds on your ambulance ride — and that doesn’t even include the cost of the medical care itself. In fact, medical debt is the leading type of debt on credit cards in the U.S. But… if you live with disabilities or chronic illnesses, those medical costs are significantly higher. On top of that, the sacrifices you might make in order to afford the medical care can come at the cost of one’s social life, or even basic needs...
2023-07-2749 minCURE SYNGAP1 PODCAST aka SYNGAP10
CURE SYNGAP1 PODCAST aka SYNGAP10#SYNGAPconf22 was a hit, join us in 2023… #S10e86PRE-REGISTER FOR NEXT YEAR https://twitter.com/cureSYNGAP1/status/1608462863819067397 https://docs.google.com/forms/d/e/1FAIpQLSfetAr8YH41nbJrJy1uXqJeS37nQD6khjDn-LiFxIWo5oUBjA/viewform    Buy this book on Amazon or on JR’s website - #MoreOfEverthing by JR https://janiereade.com/ https://www.amazon.com/More-Everything-extreme-special-emotional-ebook/dp/B0BQ2C7HNL    JACKIE KANCIR STORY https://www.facebook.com/cureSYNGAP1/posts/pfbid0gTTnF77VdbTirweTyKqKxHzDkNz66jUxxnvwMzjUxzwzFU1Q1U4HYrDywFMoBeAkl https://twitter.com/cureSYNGAP1/status/1608216895240671232?s=20&t=INvuB36y5oJM-bL_RKtscg https...
2022-12-2915 minSynGAP10 weekly 10 minute updates on SYNGAP1
SynGAP10 weekly 10 minute updates on SYNGAP1#SYNGAPconf22 was a hit, join us in 2023… #S10e86PREREGISTER FOR NEXT YEAR https://twitter.com/cureSYNGAP1/status/1608462863819067397 https://docs.google.com/forms/d/e/1FAIpQLSfetAr8YH41nbJrJy1uXqJeS37nQD6khjDn-LiFxIWo5oUBjA/viewform Buy this book on Amazon or on JR’s website - #MoreOfEverthing by JR https://janiereade.com/ https://www.amazon.com/More-Everything-extreme-special-emotional-ebook/dp/B0BQ2C7HNL JACKIE KANCIR STORY https://www.facebook.com/cureSYNGAP1/posts/pfbid0gTTnF77VdbTirweTyKqKxHzDkNz66jUxxnvwMzjUxzwzFU1Q1U4HYrDywFMoBeAkl https://twitter.com/cureSYNGAP1/status/1608216895240671232?s=20&t=INvuB36y5oJM-bL_RKtscg https://www.linkedin.com/fe...
2022-12-2915 minSynGAP10 weekly 10 minute updates on SYNGAP1
SynGAP10 weekly 10 minute updates on SYNGAP1Soiree: incredible, Boston: Fabulous & two todos before SYNGP-A-PALOOZA ‘22, NASHVILLE #S10e82ATLANTA was an incredible event and a success for more reasons than you think - Check out this video: https://www.youtube.com/watch?v=NEEob7CzlfY - Family connection is everything - Raised funds from Atlanta community, it’s us folks. Real but not True: https://www.psychologytoday.com/us/blog/finding-true-refuge/201702/real-not-true BOSTON dinner, last night, was magical too. Check out this video: https://www.facebook.com/634352803/videos/512400737470459/ You have a WEEK to do RARE-X! Data to be shared at our meeting. https://syngap1.rare-x.org/ They will pull the data on Nov. 25th. Send Summer a photo: Su...
2022-11-1410 minCURE SYNGAP1 PODCAST aka SYNGAP10
CURE SYNGAP1 PODCAST aka SYNGAP10Soiree: Incredible, Boston: Fabulous; & two to-dos before SYNGP-A-PALOOZA ‘22, NASHVILLE #S10e82Soiree: incredible, Boston: Fabulous & two todos before SYNGP-A-PALOOZA ‘22, NASHVILLE   #S10e82 ATLANTA was an incredible event and a success for more reasons than you think - Check out this video: https://www.youtube.com/watch?v=NEEob7CzlfY - Family connection is everything - Raised funds from Atlanta community, it’s us folks. Real but not True: https://www.psychologytoday.com/us/blog/finding-true-refuge/201702/real-not-true BOSTON dinner, last night, was magical too.  Check out this video: https://www.facebook.com/634352803/videos/512400737470459/ You have a WEEK to do RARE-X!  Data to...
2022-11-1410 minCURE SYNGAP1 PODCAST aka SYNGAP10
CURE SYNGAP1 PODCAST aka SYNGAP10SYNGAP-A-PALOOZA ‘22, NASHVILLE & a bit more on ASOs #S10e81ATLANTA: 11/12 https://cbo.io/bidapp/index.php?slug=syngap  Stoke Update on STK-001 Phase 1/2a studies https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-host-webinar-and-conference-call-present  PMC 11/14-15 https://www.personalizedmedicinecoalition.org/events/Events/Personalized_Medicine_and_the_Patient 188+ Medical Records Matter: Sign up for CIITIZEN: https://www.ciitizen.com/syngap1/  SYNGAP1 ANNUAL MEETING aka “SYNGAP-A-PALOOZA” NASHVILLE 12/1 & 2 https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path  8-8:30 WELCOME AND BREAKFAST - Lauren 8:30-10:45 SYNGAP1 CAREGIVERS: REALITY, RESILIENCE AND RESOURCES - Becky Sansbury & Nancy Kessler 11:00-12:00 REGISTRIES - Invitae, Simons...
2022-11-1114 minSynGAP10 weekly 10 minute updates on SYNGAP1
SynGAP10 weekly 10 minute updates on SYNGAP1SYNGAP-A-PALOOZA ‘22, NASHVILLE & a bit more on ASOs #S10e81ATLANTA: 11/12 https://cbo.io/bidapp/index.php?slug=syngap Stoke Update on STK-001 Phase 1/2a studies https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-host-webinar-and-conference-call-present PMC 11/14-15 https://www.personalizedmedicinecoalition.org/events/Events/Personalized_Medicine_and_the_Patient 188+ Medical Records Matter: Sign up for CIITIZEN: https://www.ciitizen.com/syngap1/ SYNGAP1 ANNUAL MEETING aka “SYNGAP-A-PALOOZA” NASHVILLE 12/1 & 2 https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path 8-8:30 WELCOME AND BREAKFAST - Lauren 8:30-10:45 SYNGAP1 CAREGIVERS: REALITY, RESILIENCE AND RESOURCES - Becky Sansbury & Nancy Kessler 11:00-12:00 REGISTRIES - Invitae, Simons, Rare-X w/Q&A 12:00-12:30 LUNCH 12:30-1:15 GETTING CLINICAL TRIAL READY - Kathie Bishop, Acad...
2022-11-1114 min