A revolutionary approach to healthcare for people with severe autism, IDD, and complex co-occuring conditions. Replay now available of the Kramer Davis Health webinar with Dr. Matthew Holder. #profoundautism #healthcare #IDD #complexcare #KramerDavisHealth youtu.be/DixCd6gxeuI?si…

As an SPPC member, I supported this integration of these departments. Caring for my daughter with profound autism, SynGAP1, and LGS informs my support for this measure. I am hopeful Aging may help bridge our gaps for young people with high acuity needs to access better care.

Thank you The AADMD for offering me the space to discuss these hard looks across differences in the autism community.

People with #highacuity needs, especially those with #severebehaviors and #IDD are suffering in a modernized #institutionalization while dogmatic #advocacy groups cling to complacency and obsolete codes. Break the silence. Keep innovating solutions. ncsautism.org/blog//a-major-…

Vote YES on the Creating Hope Reauthorization Act (H.R. 7384) reauthorizes the Rare Pediatric Disease Priority Review Voucher (PRV) program for four years! cc Jackie Kancir

🔥preprint from Helen Willsey Lab UC San Francisco! Uses data from Ciitizen & Simons Foundation! Great analysis on #SYNGAP1 #CHD8 #SCN2A #CHD2 & #DYRK1A #Autism gene variants disrupt enteric neuron migration and cause gastrointestinal dysmotility cc Julia Dallman Chan Zuckerberg Initiative biorxiv.org/content/10.110…

Excited to say that it’s preprint time🎉! Here we provide evidence that autism gene variants affect enteric neuron migration and cause gastrointestinal (GI) dysmotility doi.org/10.1101/2024.0…

Do you love someone with #epilepsy or live with it yourself? If so, spend a minute encouraging you elected reps to join the #CongressionalEpilepsyCaucus. 1 Click Link epilepsiescaucus.org/blank 2 Enter Address 3 Personalize notes (optional) 4 Send #NationalPlanForTheEpilepsies

Integrated #healthcare, IDD med school curriculum, risk reduction, intensive #behavior interventionists, #biopsychosocial models - The AADMD did not disappoint! An amazing conference that renewed hope for brighter days ahead for #IDD. NCSA ncsautism.org/blog//ncsa-goe…

Family caregivers, have your voice heard. Next month's IACC topic is all about you! Submit your public comment. Deadline is June 24th. NCSA has posted theirs with tips and more information for you on the blog. ncsautism.org/blog/iacc-july #caregiving #profoundautism #advocacy

Where does the systemic erosion of #DisabilityRights or services for individuals with profound #IDD / #autism and symptoms of challenging behaviors end? State advocates urged carve-outs. This bill was written with eyes wide open. #Vote #YourVoiceMatters

If you have a son or daughter with profound autism, you need to read this.👇👇👇

Data suggests that drowning is the leading cause of death for kids with #autism. Often, they can be attracted to the serene qualities of water as a "low-sensory area" that eases nerves, experts say. disabilityscoop.com/2024/08/16/why… #disabilities

When I saw the entire arena cheering #GusWalz, I didn't see weird -- I saw the world I dream of. #Partners30 #profoundautism #SynGAP1 #DNC2024CHICAGO

Where are we with the Autism CARES Act? Check out the latest newsletter for details.

Empathy without action falls short. As we learn about severe autism, let lived experiences and authentic awareness drive meaningful change in policy and support systems. Submit your comment: ncsautism.org/comment14c #PublicPolicy #14c #SevereAutism #ProfoundAutism

It’s the same dated old story when journalists turn to their familiar few sources, the usual organization or two, to somehow speak for everyone with #autism. People with severe autism are left out of coverage time and again. Make 2025 the year for fresh sources & full inclusion

.ABC News News leaves out the voices of severe autism in a one-source segment responding to RFK Jr. / CDC autism report. No reporting on the urgent need for answers to self-injury, seizures, catatonia, profound communication impairments and other serious issues. No mention of the

WTVC NewsChannel 9 NCSA encourages a deeper investigation into the overlooked crisis in care for families with severe autism in TN. Read about it here: ncsautism.org/blog/chattanoo…

💚💜🩵 Great news for the rare disease community! CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3)