Takeaways from Tallahassee — The first of many

Sunshine Genetics uses whole-genome sequencing to screen newborns for nearly 900 rare genetic conditions. ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌

From: Extensive Media Enterprises A milestone for Florida State University: The first families have been enrolled in the Sunshine Genetics pilot program at its Florida Institute for Pediatric Rare Diseases (IPRD). The program uses whole-genome sequencing to screen newborns for nearly 900 rare genetic conditions. Early identification of these conditions empowers families with knowledge about their newborn, reduces diagnostic delays and accelerates the path to treatment or specialized management. “Two years ago, this was an idea we were fighting to make a reality. Today, Florida families can enroll their newborns in a program we once could only imagine. This remarkable progress is a testament to the doctors, researchers and industry leaders, as well as the hospitals and universities across Florida and around the country, who believed in this vision and worked to make it possible,” said Rep. Adam Anderson, who helped champion the legislation that established both the IPRD and Sunshine Genetics Act. Anderson also delivered a keynote address at the International Consortium of Newborn Sequencing (ICoNS) this week at Harvard Medical School before an international collection of experts in the field. He was joined by IPRD and Sunshine Genetics leadership as well as leaders from many of the program’s partners. IPRD administers Sunshine Genetics, with guidance from its steering committee and support from Baylor Genetics, GeneDx, Nest Genomics and Amazon Web Services. “Enrolling our first families enables us to begin the carefully coordinated approach to implementing a statewide genomic newborn screening program responsibly,” said IPRD Director Pradeep Bhide. “The steering committee and participating organizations have worked together to establish the governance, clinical and laboratory workflows, quality safeguards and lines of accountability needed to support every stage of the program, from enrollment and consent to sequencing, interpretation, results disclosure and recommendations for follow-up care.” GeneDx was one of IPRD’s first major industry partners. Its contributions to efforts to find cures for rare pediatric genetic diseases include strategic and operational guidance during the lead-up to the Sunshine Genetics launch. The first Sunshine Genetics Pilot Program families and their newborns enrolled. Image via Chris Condon/FSU College of Medicine. The program’s gene list is also derived from the BRIDGES-NBS program, developed in partnership with GeneDx. “We believe genomics should be a starting point for health, not a last resort after years of searching for answers,” said Linda Genen, chief medical officer at GeneDx. “We’re proud to bring our deep clinical and genomic expertise to help guide programs like this, ensuring they are designed to deliver meaningful, actionable information for clinicians and families. Florida is demonstrating what’s possible when state leaders, academic institutions and genomic experts work together to thoughtfully integrate genomics into care and give more families a clearer path forward from the very beginning.” Although Sunshine Genetics will create a data resource to support research, discovery and innovation in the diagnosis and treatment of pediatric rare diseases, the program is also committed to keeping families’ and participants’ data private and not shareable. The program says it is committed to protecting participant privacy while developing a research data resource. AWS is helping make the database secure and scalable so it can collect and store genomic and clinical data that will accelerate the diagnosis and treatment of pediatric rare diseases. AWS will also help turn that data into actionable insights that could fuel discovery and drive innovation. A new era of precision medicine could be here, thanks to FSU, IPRD, and the partners and sponsors who make it a reality. “The Sunshine Genetics pilot is unique in the United States as the only project initiated and funded by the state Legislature, with the express goal of generating evidence to determine whether this should be expanded to benefit all 225,000 babies born each year in Florida,” said David Ledbetter, IPRD’s senior associate director of precision medicine. “We are excited to be working with our outstanding genetics and newborn screening expert colleagues at the University of Miami, University of South Florida, University of Florida, children’s hospitals in the state and our world-class industry partners.” For more information about this program, visit the Sunshine Genetics website or Florida Institute for Pediatric Rare Diseases website. ___ Coming up, the usual assortment of news, intel, and observations from the week that was in Florida's capital city by Peter Schorsch, Drew Wilson, Drew Dixon, Liam Fineout and the staff of Florida Politics. But first, the "Takeaway 5" — the Top 5 stories from the week that was:   Take 5   Hunker down — Hurricane Isaias made landfall near Destin at 9:30 p.m. Friday as a Category 2 storm with sustained winds of 105 mph, bringing dangerous storm surge and flooding threats to Florida’s Panhandle. The hurricane weakened from Category 3 strength earlier Friday but remained capable of driving damaging winds inland into Alabama. Forecasters warned of life-threatening flash flooding, possible tornadoes and rainfall totals reaching 15 inches in parts of the Panhandle and Big Bend. Gov. Ron DeSantis expanded Florida’s state of emergency to 27 counties, with about 5,000 National Guard personnel mobilizing and 6,000 utility linemen staged for recovery. The storm’s center was expected to cross Alabama before reaching the Tennessee Valley over the weekend, with flooding risks extending across the Southeast. Expunged — The leaked grand jury report in the high-profile case involving alleged misappropriations by the Hope Florida Foundation has been ordered to be fully expunged by the 1st District Court of Appeal (DCA). The 1st DCA found that the grand jury erred by publicly excoriating people who were not indicted and that the report’s premature leak breached confidentiality. The controversy involved $10 million steered into political committees from a Medicaid settlement between Centene and the Agency for Health Care Administration during the 2024 campaign cycle. Despite insufficient evidence to charge anyone, the report was leaked to the media, making it a major talking point for Democrats this campaign season. Now, with less than four weeks until the election, that report is fully sealed. And DeSantis and his allies are thrilled. Toss-up — The clock is ticking. The pool of undecided voters is shrinking. But Florida’s race for Governor hasn’t moved. Republican Byron Donalds drew 44.7% support to Democrat David Jolly’s 44.6% in a new St. Pete Polls survey for Florida Politics — exactly the same one-tenth-point margin the pollster found three weeks earlier. Both candidates gained 1.2 percentage points since the mid-September survey, which showed a 43.5%-43.4% race, with Donalds ahead. The difference came from voters backing neither candidate. Undecided voters fell from 8.9% to 6.9%, while the share choosing someone else slipped from 4.3% to 3.9%. Together, 10.8% of voters now back neither major-party nominee, down from 13.2% in September, with fewer than four weeks remaining before Election Day. The shifts remain within the surveys’ margins of error. But the new poll shows a race that hasn’t separated, even as both candidates draw support from a narrowing pool of uncommitted voters. Ridiculous — DeSantis wasted little time suspending Mike Caruso as Palm Beach County Clerk in August after Caruso, whom he appointed, was arrested on child sexual abuse charges. Now, he’s wasting little time bashing the Republican Party of Palm Beach County for listing Caruso among the nominees to win back the Clerk’s job — a move the party has since reversed. “It was ridiculous,” DeSantis said during a Tuesday news conference in West Palm Beach. “Party (loyalty) is fine, but it’s not the end-all-be-all. Sometimes you just have to do the right thing, and the right thing in this position is not to be 'endorsing' a candidate under potential, very serious charges.” Party Chair Carl Cascio said the guide listed Republican nominees under what the party described as a legal requirement and was not an endorsement. See you in court — The Seminole Tribe is suing online gambling company DraftKings, arguing that the sportsbook infringes on the Tribe’s exclusive control of sports betting in Florida by operating without a state license. The suit was filed in Broward County. The Tribe, which operates Hard Rock Bet, alleges that DraftKings is violating state law and the 2021 Seminole Compact. The plaintiff seeks an injunction blocking operation, restitution, disgorgement of profits, and legal fees and costs. The 72-page complaint alleges that DraftKings’ Florida platform is essentially the same as in other states where the company is not legally barred from offering online betting, and that the company sued to undermine the Compact so it could operate without encumbrance in Florida.   Bracing for Isaias   Storm footing. DeSantis placed 27 Florida counties under a state of emergency for Hurricane Isaias as Florida assembled personnel, equipment and supplies for storm response. The Governor signed the initial declaration Tuesday, when Isaias was still Tropical Depression Nine. A Wednesday amendment added Citrus and Levy to the 25 counties originally covered. The original order authorizes activation of the Florida National Guard and Florida State Guard as needed, gives emergency officials authority to coordinate response and recovery, and makes public facilities available for emergency shelters. In a Thursday update, the Governor’s Office reported that more than 6,000 linemen and restoration personnel were standing by to help restore power after the storm. The State Emergency Response Team is working hard. Image via @FLSERT. Nearly 400 Florida State Guard soldiers had been deployed for missions including search and rescue, damage assessments and debris clearance. The National Guard was preparing to mobilize about 5,000 members by Friday. The Department of Transportation had staged 260 pieces of heavy equipment, nearly 1,000 generators and 100 pumps. Workers were clearing drainage systems, while bridge inspectors were positioned for assessments after the storm. The Department of Law Enforcement was coordinating the staging of two urban search and rescue teams in Tallahassee and arranging first responder refueling locations along Interstate 10. The Department of Health was coordinating special needs shelters in seven counties. Children and Families’ preparations included more than 140 pallets of food, 48 pallets of water and coordination with hot meal providers. Residents can find county emergency management contacts at FloridaDisaster.org/Counties and check FL511 for road and bridge closures.   The Highwaymen   Hey Alexa, play the Kraftwerk album “Autobahn” from start to finish. This week, DeSantis, recently spotted at the Tampa Bay Rays vs. New York Yankees playoff game, made his way to the Vero Beach area to celebrate the opening of a new Interstate 95 (I-95) interchange at Oslo Road in Indian River County. This major project is opening to drivers one year earlier than expected, thanks in part to Florida’s commitment to accelerating transportation project delivery. “Today, I was proud to announce that the new I-95 interchange at Oslo Road in Indian River County has been completed a year ahead of schedule,” said DeSantis. “Floridians cannot wait years while needless bureaucratic delays stall important infrastructure projects. This new interchange is an investment in congestion relief and public safety. Oslo Road commuters will see their drive times cut in half, and emergency response times along I-95 will be reduced by up to 56%.” The gold scissors arrived ahead of schedule. This new interchange will provide direct access to I-95 for the first time from this corridor and is Indian River County’s first new interchange in more than 50 years. The cherry on top? Oslo Road was also widened from two to four lanes for additional capacity and provides enhanced interstate access, sidewalks and bicycle lanes. “Under Gov. DeSantis’ leadership, Florida has championed the use of innovative measures to deliver projects even faster while bringing the most value for our communities. Opening this interchange one year ahead of schedule reflects this commitment and will bring major benefits to the Treasure Coast, from local residents and supply chain partners to Florida’s protected species,” said FDOT Secretary Jared W. Perdue. In theory, the new interchange and widening of Oslo Road will improve emergency response times by up to 56% for incidents along I-95, provide an additional evacuation route, strengthen freight movement and supply chain efficiency, and allow for the creation of a gopher tortoise habitat — the only relocation site in southeast Florida.   Medicaid fraud, meet your maker   DeSantis said Tuesday that Florida’s push to catch Medicaid fraud before paying claims is delivering results. Back in June, DeSantis announced that the state was shifting away from a “pay-and-chase” model toward preventing fraud before any money is spent. In turn, the Agency for Health Care Administration (AHCA) strengthened its provider screening and oversight, expanded data analytics and claims monitoring, and imposed enrollment moratoriums on certain high-risk provider categories. “Florida’s Agency for Health Care Administration’s Medicaid integrity initiative is delivering results,” DeSantis said. “This year, we announced the most significant Medicaid integrity initiative in the history of our state, and today, I was proud to announce some of the results from these efforts.” Ditching 'pay-and-chase' is producing results. Since January, AHCA has conducted more than 400 provider site visits as part of its heightened program integrity efforts, focusing on areas where data and billing patterns have identified heightened risk — Applied Behavior Analysis (ABA), Durable Medical Equipment, and Adult Day Care. AHCA’s work also identified suspicious billing practices, such as providers billing Medicaid for excessive hours of service, including consecutive days of service for months, as well as weekends and holidays. “Protecting Medicaid means protecting the people it was created to serve,” added AHCA Secretary Shevaun Harris. “For children, pregnant women, the disabled, and our seniors, it means making sure they have access to high-quality care while ensuring taxpayer dollars are not lost to fraud or abuse. AHCA will continue taking decisive action to strengthen program integrity, hold bad actors accountable and safeguard these critical services for Floridians.”   Network down   Attorney General James Uthmeier has filed a civil lawsuit against TP-Link, a Wi-Fi router manufacturer. The legal action alleges the company misled Florida consumers about its products' security and its ties to China. "TP-Link sold Floridians the digital front door to their home network while misrepresenting how secure it was, how separated the company was from China, and what could happen to their data," Uthmeier said in a post on X. Uthmeier filed the 59-page lawsuit in Polk County, in Florida's 10th Judicial Circuit. In a recorded video statement, he said TP-Link falsely claimed that its routers and its HomeShield security service covered every security scenario and offered 100% protection. "Those claims are not true, and we are bringing the lawsuit against TP-Link," Uthmeier said. "Chinese state-sponsored hackers exploited TP-Link routers sitting in American living rooms. Many of those models cannot update themselves automatically, and TP-Link has stopped supporting them." Have you considered Netgear? Perhaps D-Link? "They also told Floridians they had split from China and that they build U.S. products in Vietnam. That is fiction. Research and manufacturing remain rooted in China. Less than 1% of the parts in that Vietnam plant actually come from Vietnam." Those practices leave consumers' internet connections at risk, the lawsuit states, and turn consumers into unwitting participants in malicious campaigns carried out on behalf of foreign governments. "We will not allow families to be misled into handing their personal data to the Chinese Communist Party. We are seeking an injunction, restitution for Florida consumers and the penalties under Florida law," Uthmeier said. The TP-Link suit is the latest in a series Uthmeier has filed against technology companies over the past year.   Instagram of the week     Real big fish   Uthmeier announced 10 people are facing poaching-related charges following a years-long investigation into illegal fishing along Florida's Gulf Coast. He said the suspects are accused of illegally catching about 23,000 pounds of fish, including red snapper and gag grouper. Those arrested are believed to have sold fish, shrimp, and sea turtles worth more than $150,000. Uthmeier, flanked by multiple law enforcement officials, made the announcement at a news conference in Franklin County. "This was a large-scale operation from Bay County to the Big Bend and all the way down to Pinellas County," Uthmeier said. The Attorney General hit the bag limit on illegal anglers. He added the investigation began in 2022, when undercover officers with the Florida Fish and Wildlife Conservation Commission (FWC) were approached by a suspected poacher who wanted to sell them illegally caught fish. The officers went along with the scheme to infiltrate what grew into a ring of suspected poachers. FWC Executive Director Roger Young said the scale of the operation was serious. "Poaching is not a victimless crime. This is stealing opportunities," Young said. "Poachers are behind the scenes stealing and robbing from those who do it the right way." Three suspects — Terry Carrington, Anthony Folsom and Jordan Neylan — face charges of racketeering, conspiracy to commit racketeering, unlawful possession or sale of marine turtles, unlawful use of a two-way communication device and cheating. The five sea turtles sold were three adults and two hatchlings TO SEEMORE TAKAWAYS FROM TALLAHASSEE CLICK HERE