Video & Transcript Research : 'Sanfilippo Syndrome'

Page 1 of 36
FL

Florida 2026 Regular Session

Appropriations Committee on Health and Human Services Feb 25th, 2026

Appropriations Committee on Health and Human Services

Summary: The Appropriations Committee on Health and Human Services met with a quorum present and took up several health-related bills. CS/SB 1110 on Medicaid and insurance coverage for orthotics and prosthetics was heard first. The bill would require coverage for medically necessary orthotics and prosthetics without lifetime or continuous-use caps, direct AHCA to seek federal approval and update contracts, and require annual reporting. Testimony from a child using prosthetic “gymnastics blades,” his mother, and another young person with a prosthetic leg emphasized the high cost of activity-specific devices and the impact on children’s mobility, sports participation, and quality of life. Senators voiced strong support, and the bill was reported favorably. The committee then approved SB 1574, “Maddie’s Law,” which adds newborn screening for biliary atresia using the existing blood specimen collected at birth. The sponsor and the child’s father described the condition as time-sensitive and potentially fatal without early detection, and argued the screening could prevent transplants and save money. The bill was reported favorably. The committee also considered CS/SB 794 on background screening for employees of residential facilities and day training programs for people with developmental disabilities, plus a review of waiver support coordination quality, training, and access issues. Parents and a support coordinator testified that strong support coordination is essential for families and that the bill would help standardize expectations and improve services. An amendment aligning the bill with the House companion was adopted, and the bill was reported favorably. Members next heard SB 162, which requires hospitals and ambulatory surgical centers to adopt policies using smoke evacuation systems during procedures that generate surgical smoke. Supporters, including nurses and the Florida Nurses Association, described surgical smoke as a workplace hazard with toxic chemicals and potential cancer risks; hospital representatives said they support the intent but argued existing federal and state standards already regulate the issue and the bill is too prescriptive. A late-filed amendment clarifying the smoke must be “effectively captured and filtered” was adopted, and the bill passed favorably. The committee also approved CS/SB 254, a major nursing education bill that tightens oversight of low-performing nursing programs, creates a temporary provisional license and preceptorship pathway for graduates awaiting NCLEX results, requires remediation for delayed testing, and increases transparency by posting passage rates. Nursing groups supported stronger standards, while private nursing schools warned the bill could reduce capacity and discourage program directors; the amended bill was reported favorably. Finally, the committee heard SB 688, which would reestablish licensure and regulation of naturopathic doctors in Florida, create a board of naturopathic medicine, set licensure and renewal requirements, and define the scope of practice while excluding most prescription authority. Supporters said it would expand health care choices and allow naturopathic doctors to practice openly, while opponents from the medical community warned the bill could authorize diagnosis and treatment without sufficient training and rely on unproven therapies. The bill was reported favorably. The committee then adjourned after members thanked staff for their work.
NM

New Mexico 2026 Regular Session

House - Appropriations and Finance Feb 15th, 2026 at 12:53 pm

House Appropriations & Finance

Transcript Highlights:
  • appropriation to the Department of Health to provide training and education to prevent shaken baby syndrome
  • Shaken baby syndrome is now called abusive head trauma, and it is brain damage from baby shaking.
  • Research shows that prior to the Shaken Baby Syndrome prevention education being required statewide,
  • Does that line item specifically say shaken baby syndrome? prevention funding? It does. Thank you.
Bills: HB97, HB280, HB183, HB151, HB202
FL

Florida 2026 Regular Session

Children, Families, and Elder Affairs Feb 10th, 2026

Children, Families, and Elder Affairs

Bills: S0556, S0794, S1600
Summary: The Committee on Children, Families, and Elder Affairs considered three bills and a confirmation. On SB 1600, the committee adopted a strike-all amendment and a technical amendment that shifted the bill from creating an accreditation process to requiring the Office of Insurance Regulation, DCF, and community-based care lead agencies to study liability insurance coverage and availability in the child welfare sector and report findings to the legislature by January 1, 2027; the bill also included enforcement provisions for failure to provide requested information. Support was noted from child and family advocacy groups, and the committee reported the bill favorably. The committee also heard CS for SB 556, which would allow students with disabilities to satisfy a physical education graduation requirement through participation in Special Olympics, if included in the student’s IEP, and would clarify that two years of marching band participation can satisfy both PE and fine arts credit. Special Olympics Florida, families, and other supporters testified in favor, emphasizing flexibility, access, and recognition of rigorous activity. The bill was reported favorably. The committee then considered CS for SB 794, which requires background screening for employees of residential facilities and day training programs serving people with developmental disabilities and directs a review of waiver support coordination, including quality, consistency, access, competencies, recruitment and retention, caseloads, and geographic gaps in services. An amendment to conform to the House version was adopted, and the bill was reported favorably. Members then questioned Secretary Taylor Hatch regarding her confirmation as Secretary of the Department of Children and Families. Senators raised concerns about child welfare system performance, parent notification and rights, CBC funding formulas, managing entities, opioid settlement spending, peer support expansion, and technology/interoperability improvements. Hatch described DCF’s recent data and initiatives, including reductions in out-of-home care entries, youth advisory efforts, missing children recovery operations, expanded behavioral health capacity, and technology upgrades for benefits processing. Public comment included support from family and provider organizations and concerns from a former foster care worker about medical misdiagnosis cases. The committee voted to recommend Hatch’s confirmation favorably, with Chair Grall voting no, and adjourned after allowing Senator Sharief to be recorded as voting in favor of SB 1600.
FL

Florida 2026 Regular Session

Education Pre-K - 12 Jan 13th, 2026

Education Pre-K - 12

Transcript Highlights:
  • So that's for the education programs, Down syndrome and other developmental disabilities and emotional
Bills: S0206, S0420, S0556
Summary: The committee first heard SB 420, which would require portraits of George Washington and Abraham Lincoln to be prominently displayed in classrooms used for social studies and in all K-5 classrooms, with the Department of Education selecting the portraits. Senator Burgess framed the bill as a patriotic and educational measure tied to America’s 250th anniversary, while Senator Davis raised concerns about exclusivity, political precedent, and state intrusion into local classroom decisions. Senator Osgood and others asked about sensitivity to diverse student populations and whether additional figures such as Harriet Tubman could also be displayed. Burgess said the bill would not prevent other displays, emphasized the two presidents’ historical significance, and committed to funding support so the mandate would not burden districts. The committee voted the bill favorably. The committee then took up CS/SB 206 on autism education and teacher preparation. Senator Harrell’s strike-all amendment required teacher preparation programs to include autism and other neurodevelopmental disabilities, required ESE-certified teachers to complete an autism microcredential, created an autism loan forgiveness program and salary supplement provisions, and directed district professional development to include autism-specific training with local CARD centers. A second amendment removed a proposed change to the legal definition of autism so that issue could be handled separately. Senators Davis and Osgood asked about implementation timelines, grandfathering current teachers, and how the bill would affect educators already working in autism classrooms; Harrell said he was open to further discussion and wanted to ensure flexibility while still requiring the credential. Public testimony included support from Orange County Public Schools, a parent of children with autism, and others. The committee adopted the amendments and reported the bill favorably. Finally, the committee heard CS/SB 556, which allows students with disabilities to satisfy the high school physical education requirement by participating in Special Olympics for one year if included in the student’s IEP. An amendment also clarified that two years of marching band satisfies both the PE credit and a fine or performing arts credit. Supporters said the bill expands inclusive options and reduces administrative burdens, and Senator Yarborough praised the change as giving students more flexibility. The committee adopted the amendment and reported the bill favorably. The committee also took up confirmation votes for appointments in tabs 4 through 7 and recommended all of them favorably by a single roll call vote.
MN

Minnesota 2025-2026 Regular Session

Child Committee Meeting - 2026-03-24

Children and Families Finance and Policy

Transcript Highlights:
  • HF 4384, a bill that would strengthen education on abusive head trauma, also known as shaken baby syndrome
  • known as on abusive head trauma, also known as shaken<00:04:00.000> baby<00:04:00.239> syndrome
  • <00:04:01.120> As<00:04:01.360> you<00:04:01.519> may shaken baby syndrome.
  • As you may shaken baby syndrome.
LA

Louisiana 2026 Regular Session

House of Representatives Jun 1st, 2026

Louisiana House Floor Meeting

FL

Florida 2026 Regular Session

Appropriations Committee on Pre-K - 12 Education Jan 28th, 2026

Appropriations Committee on Pre-K - 12 Education

Transcript Highlights:
  • best times in the classroom I mostly have taught students who are identified as having Asperger syndrome
  • best times in the classroom I mostly have taught students who are identified as having Asperger syndrome
Bills: S0124, S0206, S0420
Summary: The committee first heard SB 124, which updates Florida Virtual School’s statute to remove outdated language and clarify its service, funding, governance, reporting, and district coordination provisions without changing day-to-day operations. Florida Virtual School testified in support, members praised the bill, and it passed unanimously on a roll call vote. The committee then took up CS for SB 206 on students with autism spectrum disorder. Senator Harrell explained that the bill would require autism and neurodevelopmental training in educator preparation programs, require ESE-certified teachers to complete an autism microcredential, create an Autism Educator Loan Forgiveness Program, provide salary supplements for teachers with the autism endorsement, and require district professional development to include autism-specific training with local CARD centers. A large number of speakers—teachers, parents, students, and advocacy groups—supported the bill while urging that implementation be fully funded, high quality, and not become an unfunded mandate. Several members spoke in favor, emphasizing the growing number of students with autism and the need to recruit and retain special education teachers. The bill was reported favorably by committee vote. Finally, the committee considered SB 420 on patriotic displays in classrooms. Chair Burgess explained the bill as a way to place portraits of George Washington and Abraham Lincoln in schools to encourage civic and patriotic reflection, and he offered an amendment narrowing the requirement from every classroom to one prominent display in each school and adding language making it subject to state appropriation. The amendment was adopted. Testimony on the bill was mixed: some speakers supported the idea as a spark for civic discussion, while many others opposed it as symbolic, unnecessary, or better addressed through curriculum and teacher training rather than mandated displays. In debate, some senators argued the portraits could prompt broader historical conversations, while others raised concerns about representation, classroom autonomy, and funding. The transcript ends during debate on the amended bill, before a final vote is shown.
TX
Transcript Highlights:
  • I mean, the list of these diseases is so rare that I hadn't even heard half of these: Barr syndrome,
  • Fabry's disease, Batten's disease, LCMD, Sanfilippo syndrome, and there's more.
OK

Oklahoma 2026 Regular Session

Health and Human Services 2ND REVISED Feb 16th, 2026 at 02:00 pm

Health and Human Services

Transcript Highlights:
  • medical professionals other than psychiatrists and psychologists to diagnose AD, which is autism syndrome
  • Senate Bill 1484 requires investigation by a medical examiner of deaths involving sudden infant death syndrome
FL

Florida 2026 Regular Session

Appropriations Mar 2nd, 2026

Appropriations

Summary: The Appropriations Committee met and considered a large agenda of bills, reporting several measures favorably. Early action included SB 6, a settled claim bill involving the Department of Children and Families and the estate of Leila Estrada and Sapphire Williams, which was approved for $3.8 million. The committee also passed a cybersecurity internships bill creating a Department of Commerce program with Cyber Florida, and SB 532, which lets clerks of court retain the full amount of certain excess revenue and clarifies foreclosure-sale procedures. Veterans housing measures, CS for CS for SB 1602 and SB 1604, were approved to create a pilot program and a related trust fund for vacancy relief and risk mitigation for veteran housing. The committee also favorably reported SB 1110 on Medicaid and insurance coverage for orthotics and prosthetics, with emotional testimony from a student and family describing the high cost and importance of activity-specific prosthetics. Members also approved CS for CS for SB 1012 after adopting an amendment that removed inmate emergency and specialty medical service compensation provisions while retaining changes to the contractor-operated institutions inmate welfare trust fund. Another bill, CS for CS for SB 1614, was narrowed by a delete-all amendment to focus on limiting the use of excess fees for new building construction by local governments. All of these measures were reported favorably after brief debate, with some support testimony submitted in writing or waived. The most extensive discussion centered on CS for CS for SB 17, a major Medicaid and public assistance overhaul. The bill would create a Joint Legislative Committee on Medicaid Oversight, allow the Legislature to retain its own actuary, tighten Medicaid program oversight, update encounter-data reporting, set performance standards for managed care plans, revise pharmacy benefit manager rules, and require DCF to implement SNAP fraud-reduction and payment-accuracy reforms, including photo IDs on EBT cards and updated work requirements. It also would direct agencies to seek federal waivers for Medicaid work requirements for able-bodied adults and expanded behavioral health services. After lengthy questioning and testimony, the committee adopted amendments adding a transitional medical benefits glide path for people who gain employment and later lose Medicaid eligibility, and exempting hospice patients with six months or less to live. Supporters argued the bill would improve accountability, reduce fraud, and save money, while opponents warned it would create administrative burdens, increase paperwork, and cause eligible people to lose coverage or food assistance. The committee ultimately reported the bill favorably as amended.
US

US Federal 2025-2026 Regular Session

US House Floor Proceedings (Tuesday, March 3, 2026)

US Federal House Floor Meeting

Transcript Highlights:
  • I rise in support of H.R. 3692, the Captain Accurso Gus Sanfilippo Young Fishermen's Development Act,
  • This bill has been renamed the Captain Accurso Gus Sanfilippo Young Fishermen's Development Act in honor
  • This bill has been renamed the Captain Accurso Gus Sanfilippo Young Fishermen's Development Act in honor
OK

Oklahoma 2026 Regular Session

Health and Human Services REVISED Feb 23rd, 2026 at 02:00 pm

Health and Human Services

Transcript Highlights:
  • Members, Senate Bill 1644 simply requires the alpha gal syndrome to be added to the published list of
  • attention when we sometimes diagnose diseases like Lyme's from tick bites. sometimes those are alpha gal syndrome
  • it's important that we try to get some numbers on this and figure out what's going on with alpha au syndrome