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Danny Burgess, Adam Anderson take on genetic counselor shortage

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State Sen. Danny Burgess and state Rep. Adam Anderson have filed legislation that would address a shortage of genetic counselors and strengthen the state’s capacity for advanced medical care and genetic research.

The identical measures (SB 1376 and HB 1115) would establish the Genetic Counseling Education Enhancement Grant Program within Florida’s State University System to support the development of American Board of Genetic Counseling-accredited graduate-level genetic counseling programs, to eliminate Florida’s status as a genetic counseling desert.

With just 179 licensed genetic counselors in the state, patient demand is not being met. Genetic counselors guide families facing complex genetic diagnoses, and they serve as essential partners in research, innovation and precision medicine.

“It’s not easy to develop expertise in the genetic field, and right now Florida simply doesn’t have enough trained professionals to meet the need,” Anderson said. “Genetic counselors are on the front lines, helping families navigate life-altering diagnoses and supporting breakthroughs in medical research and innovation. Financial barriers, on top of years of intensive training, should not stand in the way of Floridians willing to step into this critical role. By investing in education today, Florida can help solve a national shortage and ensure families here aren’t left behind.”

The issue is personal for Anderson. His son, Andrew, passed away from Tay-Sachs disease, an ultra-rare fatal genetic disorder with only 16 cases annually nationwide. There are more than 7,000 known rare diseases that affect some 350 million people worldwide, according to Anderson’s office.

Since his son’s death, Anderson and his family have been active in advancing research in rare diseases through the Cure Tay Sachs Foundation and their AJ Anderson Foundation. Anderson previously worked with former House Speaker Chris Sprowls to create Tay Sachs Awareness Day in Florida on Aug. 10, Andrew’s birthday.

Anderson successfully ran a bill (HB 907) last year, which Gov. Ron DeSantis signed in June, establishing the Sunshine Genetics Act. The Act authorizes the expansion of pediatric rare disease research and positions Florida as a national leader. It also established the Sunshine Genetics Pilot Program with $3 million in initial funding, laying the foundation for a new $100 billion genomic medicine industry in the state.

In 2024, Anderson successfully ushered through a bill (SB 1582) that created a grant program to fund scientific and clinical research on rare diseases.

Burgess will champion the latest effort to tackle genetic disorders in the Senate, saying this legislation is needed to grow Florida’s health care workforce.

“As medicine becomes more advanced and personalized, the demand for highly trained genetic counselors will only increase,” he said. “This legislation is about preparing Florida for the future by expanding educational opportunities, strengthening our health care workforce, and ensuring families across the state have access to the expertise they need without having to leave Florida for care.”

Doctors are praising the effort, with Dr. Pradeep Bhide, the director of the Florida State University (FSU) Institute for Pediatric Rare Diseases, calling it “a vital step toward building (the) genetic counseling workforce Florida families desperately need.”

“We are delighted to see Rep. Anderson continuing his important work to make Florida a national leader in developing new education programs to help patients and families understand the complex challenges surrounding genetic disorders,” added Dr. Charles J. Lockwood, executive vice president at USF Health and dean of the USF Health Morsani College of Medicine. “As the USF College of Public Health is home to the only accredited genetic counseling graduate program in Florida, we have a deep understanding of the need to expand the genetic counseling workforce in Florida and know that these grants will help patients and families across the state.”

The University of South Florida (USF) is currently the only Florida institution with an active genetic counseling program. FSU has a program in the approval process.

The measure would address key barriers to program growth, including faculty shortages, student financial constraints and limited access to clinical training sites. It would establish grant funds to recruit and retain qualified faculty and provide financial assistance to students. Institutions could not use funds for general administrative costs, to construct new facilities, or for non-program-related activities.

Additionally, participating universities would be required to maintain detailed compliance records and submit annual reports on expenditures and outcomes.

The bill, as currently written, does not include cost estimates or grant amounts.

If approved, the program would take effect July 1.



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Duke Energy displays new clean hydrogen facility on Florida’s east coast

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Volusia County facility can store hydrogen engergy for on-demand response.

Duke Energy Florida unveiled a new production storage system in Volusia County this month that is the nation’s first demonstrated project that’s capable of handling 100% green hydrogen.

Duke officials were on hand for the demonstration in DeBary at the company’s solar site for an explanatory showcase of two “electrolyzer units.” Those are devices that separate water molecules into oxygen and hydrogen atoms, according to a company news release.

Officials explained the green hydrogen is directed into reinforced containers for storage while oxygen is released into the atmosphere. That hydrogen is stored and used for energy when demand is highest and the stored hydrogen is directed into existing combustion turbines and technology from General Electric blends natural gas and the hydrogen.

“Diverse generation is strong, reliable generation,” said Melissa Seixas, Duke Energy Florida President. “The DeBary hydrogen project underscores Duke Energy Florida’s deep understanding of that notion and our commitment to making strategic infrastructure investments that will allow us to continue providing value for our customers while meeting their rapidly increasing demand for energy.”

The process allows the natural gas turbines to be more flexible and expands Duke’s fleet of renewable energy because the green hydrogen is on demand. Officials can turn the turbines off and on at any time. The system can also incorporate solar energy and along with the hydrogen, displaces the cost of other fuels for customers while still responding to demand, the news release said.

“The DeBary system allows for safe, reliable generation and storage of clean energy,” said Reggie Anderson, Duke Energy Florida Vice President of Regulated and Renewable Energy. “Duke Energy Florida is proud of this successful innovation and the lasting impact it will have on our industry, our company and, most importantly, our customers.”

Duke Energy has about 2 million residential and commercial customers in Florida in an area that includes about 13,000 square miles.



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Lawsuits by Trump allies could shape how the 2030 census is done and who will be counted

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The next U.S. census is four years away, but two lawsuits playing out this year could affect how it will be done and who will be counted.

Allies of President Donald Trump are behind the federal lawsuits challenging various aspects of the once-a-decade count by the U.S. Census Bureau, which is used to determine congressional representation and how much federal aid flows to the states.

The challenges align with parts of Trump’s agenda even as the Republican administration must defend the agency in court.

A Democratic law firm is representing efforts to intervene in both cases because of concerns over whether the U.S. Justice Department will defend the bureau vigorously. There have been no indications so far that government attorneys are doing otherwise, and department lawyers have asked that one of the cases be dismissed.

As the challenges work their way through the courts, the Census Bureau is pushing ahead with its planning for the 2030 count and intends to conduct practice runs in six locations this year.

America First Legal, co-founded by Stephen Miller, Trump’s deputy chief of staff, is leading one of the lawsuits, filed in Florida. It contests methods the bureau has used to protect participants’ privacy and to ensure that people in group-living facilities such as dorms and nursing homes will be counted.

The lawsuit’s intent is to prevent those methods from being used in the 2030 census and to have 2020 figures revised.

“This case is about stopping illegal methods that undermine equal representation and ensuring the next census complies with the Constitution,” Gene Hamilton, president of America First Legal, said in a statement.

The other lawsuit was filed in federal court in Louisiana by four Republican state attorneys general and the Federation for American Immigration Reform, which opposes illegal immigration and supports reduced legal immigration. The lawsuit seeks to exclude people who are in the United States illegally from being counted in the numbers for redrawing congressional districts.

In both cases, outside groups represented by the Democratic-aligned Elias Law Group have sought to intervene over concerns that the Justice Department would reach friendly settlements with the challengers.

In the Florida case, a judge allowed a retirees’ association and two university students to join the defense as intervenors. Justice Department lawyers have asked that the case be dismissed.

In the Louisiana lawsuit, government lawyers said three League of Women Voters chapters and Santa Clara County in California had not shown any proof that department attorneys would do anything other than robustly defend the Census Bureau. A judge has yet to rule on their request to join the case.

A spokesman for the Elias Law Group, Blake McCarren, referred in an email to its motion to dismiss the Florida case, warning of “a needlessly chaotic and disruptive effect upon the electoral process” if the conservative legal group were to prevail and all 50 states had to redraw their political districts.

The goals of the lawsuits, particularly the Louisiana case, align with core parts of Trump’s agenda, although the 2030 census will be conducted under a different president because his second term will end in January 2029.

During his first term, for the 2020 census, Trump tried to prevent those who are in the U.S. illegally from being used in the apportionment numbers, which determine how many congressional representatives and Electoral College votes each state receives. He also sought to have citizenship data collected through administrative records.

Republican redistricting expert had written that using only the citizen voting-age population, rather than the total population, for the purpose of redrawing congressional and state legislative districts could be advantageous to Republicans and non-Hispanic whites.

Both Trump orders were rescinded when Democratic President Joe Biden arrived at the White House in January 2021, before the 2020 census figures were released by the Census Bureau. The first Trump administration also attempted to add a citizenship question to the 2020 census questionnaire, a move that was blocked by the U.S. Supreme Court.



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Orlando wants to foreclose on historic Lake Eola area house following long neighbor fight

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On a  brick-lined street not far from the iconic Lake Eola, a fight is escalating over a historic house that’s wracked up about half a million dollars in code enforcement fines and is in danger of being foreclosed on in downtown Orlando.

A handful of Lake Eola Heights neighbors have complained  about 611 E. Concord St. regularly for years about the house parties and accused the homeowners of renting out large events instead of living there.

“The music is blaring with bass shaking my house next door. I am a professional who wakes up very early in the morning,” neighbor lawyer Brent Riddle wrote in November to the city, according to city records released following a Florida Politics records request. “There is a long history of this owner’s callous disregard for the applicable laws and zoning regulations.”

“Venue party at residential home. Loud music. Using residential home as event center. Again,” neighbor Mary Maher wrote the city in 2024.

Some reported the house had even been listed for rent by the hour on a website with ties to the adult entertainment business, the records showed.

Homeowner Holly Joffrion countered her neighbors’ and the city’s complaints aren’t true and called the code enforcement violations unfair.

“I guess you would call it like the  Karens of the HOA but it’s not a HOA. It’s the neighbors and the city of Orlando,” she said. “They’ve nit-picked every little thing that there is and there are just as many as many houses in the neighborhood that have literally the exact same make and model of these things hung on their house with no violations, with no interest.”

The city of Orlando took action and filed a complaint Nov. 20 to foreclose on the house’s code enforcement liens. The fines are accruing $75 to $500 per day so the total amount was $483,575, the city confirmed as of Dec. 18 to Florida Politics.

“The Property has become a nuisance and/or a hazardous condition, which presents a serious and continuous danger to the public and/or occupants of the Property,” the city’s complaint said in Orange County Circuit Court.

The city also argued the homeowners improperly filed a homestead exemption on the house and said they are not actually living in the Concord Street home. The city is asking the courts to rule on the issue so Orlando can move forward to foreclose and sell off the house to pay the lien.

But in an interview, Joffrion disputes the narrative raised in court records and city records about her century-old home that her family bought in 2022 for $900,000.

She argued she does in fact live in the house as she described how the couple’s nightmare began.

Holly and her husband Mikhail quickly realized their house was in bad condition from mold to water leaks to a crumbling deck after purchasing it.

Joffrion said her relationship with her neighbors has been fraught early on as the couple undertook emergency repairs and realized they were over their head with the house’s problems.

“Our neighbor is actually the former president of the historic preservation committee, so he has eyes like a hawk. He’s watching everything,” Joffrion said. “He says we’re doing unpermitted builds. … Obviously, you don’t need a permit when you’re doing emergency repairs.”

The couple initially wanted to have the house be an Airbnb but changed their mind as they began dealing with “the headache of code violations,” she said.

The couple expanded on the use of their house in a 2023 message to the city.

“It is my profession to travel globally to design & market luxury properties for AirBNB, VRBO, Marriott Vacation Club, and Hilton Grand Vacations. I own hundreds of listings across the (country) and partner with hosts in other countries to assist in growing their properties SEO. Our listings in Orlando serve as market research that help our investors understand the market potential of the area, as well as the kinds of photography & interior designs that equate to clickable listings,” the message, signed by Mikhail and Holly said. “We have 421 days of 24-hour footage showing that the property has not been used as a short-term rental, as well as the reporting from the above mentioned partners showing no bookings have been accepted or money transacted. This house is our primary residence, and a portfolio piece for my company and partners.”

Joffrion, who comes from a large family, said the Queen Anne-style house is often the site for the family’s weddings and  birthday parties.

“I’m one of seven myself. So we have 52 grandchildren  amongst me and my siblings,” Joffrion said.

When Joffrion threw her own wedding renewal, she said a neighbor who didn’t recognize her, confronted her angrily in her wedding dress.

“Excuse me. Do you know that the owners don’t even live here and it’s illegal what you’re doing?” the neighbor told her, she recounted.

Joffrion argued as she has tried to be a good neighbor and disputes her parties are too loud. She said they keep a decibel reader to make sure they are in compliant with the city’s noise ordinance.

“We encourage any of the neighbors who read (this) article to please come the next time that they hear that we’re having a party. We’ve hosted open parties and invited the neighborhood. We’ve asked them to come. They don’t come,” she said. “We’re just honestly here living our life … and we will continue to keep celebrating.”

Joffrion homeschools their children and the family planted a dream garden in the backyard to grow mint, lemons and more.

When asked if she was worried about losing her home in foreclosure, Joffrion said she believed the facts will prove her case in court.

“We have six daughters. I intend to marry each and every one of them here,” she said. “So they can look forward to at least six more weddings.”



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