Florida Senate Passes Resolution Recognizing February 15, 2024, as Angelman Syndrome Awareness Day
Artia Solutions and The Garner Group are proud to support the recognition of February 15, 2024, as Angelman Syndrome Awareness Day in the state of Florida through SR 1802, sponsored by Senator Alexis Calatayud, R-Miami Dade.
Angelman Syndrome (AS) is a rare neurogenetic disorder that affects about one in 20,000 people, and some experts support that AS could be as frequent as one in 8,000 people, or over one million individuals worldwide. People living with this rare disease have genetic variations on chromosome No. 15, and AS individuals do not produce any or enough of the protein UBE3A. This protein is essential for brain function, communication, motor function, coordination, mobility, and performance of everyday tasks.
(Pictured from left to right: Diane Parenteau, Lisa Hoffman, Senator Alexis Calatayud (R-Miami Dade), Sebastian Sugden, and John Sugden. Sebastian Sugden has Angelman Syndrome. On February 15, 2024, Angelman Syndrome advocates traveled to the Florida Capitol from their local Florida districts on behalf of the Angelman Syndrome Foundation and the Foundation of Angelman Syndrome Therapeutics in support of Senate Resolution No. 1802.)
Senator Calatayud and her staff championed the development and execution of SR 1802. She has addressed the issues of some of the most vulnerable populations in Florida, which reflects her desire and proven ability to serve all people in the state of Florida.
Representative Adam Anderson, R-Pinellas County, is the Florida House of Representatives champion for Angelman Syndrome Awareness Day. He has led efforts in creating the Florida Rare Disease Advisory Board and the creation of the FSU Pediatric Rare Disease Research Institute.
Together with The Foundation for Angelman Syndrome Therapeutics (FAST), Artia Solutions and The Garner Group are thrilled to be working alongside dedicated health policymakers.
“Rare diseases occur globally at every stage of life. As a survivor of a rare cancer, and with a granddaughter with a rare disease, I know all too well that patients, families, and caregivers have many unmet medical and social needs leading to extraordinary psychosocial and economic burdens,” said Lisa Rawlins, Senior Vice President of The Garner Group. “Efforts to improve diagnostic capabilities and to develop therapies for an estimated 7,000 rare diseases is a critical focus for us. The Garner Group’s efforts are focused on educating Florida policymakers on the special needs of patients and their families suffering from Angelman Syndrome.”
To learn more about FAST and The Angelman Syndrome Foundation (ASF), please visit cureangelman.org and angelman.org.
About the Author
The Year in Medicaid 2024
In this look back at the events of 2024, we recap significant events that shaped Medicaid pharmacy practice.
What the Medicaid Rebate Final Rule Means for Manufacturers
On November 19, 2024, the 2024 Medicaid Rebate Final Rule went into effect. The Final Rule establishes new oversight and enforcement measures for the Medicaid Drug Rebate Program (MDRP), primarily based on the changes introduced by the Medicaid Services Investment and Accountability Act of 2019 (MSIAA).
Register for Crossroads 2025
Registration for Crossroads 2025 is officially open. Crossroads will be held on August 25-27, 2025, in Nashville, Tennessee.