Saniona Video Series Highlights Impact of PWS and Hypothalamic Obesity

A new video series from Saniona is highlighting the impact, on patients and caregivers, of Prader-Willi syndrome (PWS) and an associated condition called hypothalamic obesity.

Called “Saniona’s Community Voices,” the series features people living with rare diseases, including PWS, along with their caregivers, and healthcare professionals.

The series’ introduction is timed to correspond with Prader-Willi Syndrome Awareness Month and Brain Tumor Awareness Month, both observed in May.

PWS is caused by the loss of, or defects in, paternal genes in a particular region of chromosome 15. The syndrome is characterized in part by a constant and insatiable appetite, called hyperphagia, which can lead to obesity and subsequent problems including diabetes and hypertension.

Hypothalamic obesity is usually an acquired condition, typically caused by tumor, brain swelling or head trauma, or being born with a brain malformation. PWS shares symptoms with hypothalamic obesity, such as hyperphagia and excessive daytime sleepiness.

No treatments currently are approved for hypothalamic obesity or for hyperphagia associated with PWS. However, Saniona and the Foundation for Prader-Willi Research are collaborating to apprise patients and their families of an upcoming Phase 2b clinical study evaluating the biopharmaceutical’s Tesomet as a prospective therapy for PWS. The investigative treatment aims to reduce food cravings and induce weight loss.

“Our work to discover, develop, and deliver innovative treatments begins with listening to and learning from people living with the rare diseases we aim to treat,” Rami Levin, president and CEO, Saniona, said in a press release.

“These stories from the Prader-Willi syndrome and hypothalamic obesity communities will serve as powerful reminders that we need to move faster, work harder, and push the limits of what we thought was possible. Not just during the month of May, but every day, as patients are waiting for treatments and are counting on us,” Levin added.

The video series already features or will feature interviews with caregivers and top physicians in PWS and hypothalamic obesity. They include:

• Lynn Garrick, regional program director for 13 PWS group homes and medical research coordinator for the PWS Association (PWSA), and a Minnesota PWSA board member. She also has a 13-year-old son with PWS.
• Tony Holland, MD, emeritus psychiatry professor at the University of Cambridge and a pioneer in PWS research who has studied the link between PWS and excessive eating. He’s also an ardent PWS advocate.
• Marci Serota, a registered dietitian nutritionist who focuses on childhood obesity and hypothalamic obesity. The mother of a 14-year-old son with the conditon, Serota is author of “Hungry for Solutions: A Mother’s Quest to Defeat Hypothalamic and Childhood Obesity.”
• Ulla Feldt-Rasmussen, MD, chief of medical endocrinology at the National University Hospital in Copenhagen, Denmark, and professor at the University of Copenhagen. She is an hypothalamic obesity expert and is on Saniona’s scientific board.

The videos will be posted throughout the month. For more information, send an email to [email protected].