Alba Tull Makes $500,000 Gift to the Rett Syndrome Research Trust

TRUMBULL, CT — Alba Tull has made a generous donation of $500,000 to the Rett Syndrome Research Trust (RSRT) for a clinical study to determine the ability of the Emerald biosensor to accurately measure Rett syndrome symptoms, a key factor necessary for assessing the efficacy of drugs and genetic medicines.

The Emerald — a device developed by Dina Katabi, PhD, co-founder of Emerald Innovations and distinguished professor at MIT — is a freestanding, touchless biosensor that uses the faint wireless signals bouncing around a room to measure physiological information, including breathing, sleep, and movement, all of which are negatively affected in Rett syndrome. The goal of the study is to show that Emerald can accurately measure Rett symptoms, moving it one step closer to becoming a new objective method to assess the efficacy of potential therapeutics in clinical trials and to manage patient symptoms in a clinical care setting. The Emerald sensor has been used in drug development in Alzheimer’s and Parkinson’s; this generous gift allows for testing its efficacy in Rett syndrome.

“RSRT continues to set and drive Rett syndrome research, and this donation is a reflection of my confidence in their singular mission to cure Rett,” said Tull. “As an ardent supporter of women in science, I am thrilled to be able to direct this donation to support Dr. Katabi’s innovative work while advancing the ability to effectively test medicines for Rett syndrome.”

Biopharmaceutical companies engaged with RSRT are highly motivated to develop objective symptom assessment tools, and are collaborating with RSRT and optimistically awaiting results. RSRT funded a pilot study with Emerald in Rett syndrome that generated encouraging results, suggesting that Emerald technology is feasible for Rett syndrome, and that the key symptoms of breathing and sleep disruptions can be reliably assessed and quantified. This next study is anticipated to provide critical data to show that Emerald’s measurements of key Rett symptoms match the current gold standards, though the sensor operates remotely without body contact.

“With two approved gene replacement clinical trials for Rett, Alba’s generous gift comes at a transformational moment,” said RSRT CEO Monica Coenraads. “Her support of the Emerald validation study accelerates our agenda to revolutionize the way clinical trials are designed for Rett. She is a passionate supporter of our cause and has my deep gratitude and admiration.”

Inspired by a friend’s young daughter who was diagnosed with Rett syndrome, Tull joined RSRT’s Board of Trustees in 2016, where her leadership, vision, and support have been invaluable.

“My friend Stephanie Bohn’s daughter, Sadie, was born in 2014. When Stephanie told me Sadie had been diagnosed with Rett syndrome, I was inspired to learn more about the disorder,” Tull shared. “The more I learned, the more I realized how devastating Rett is and how many families are impacted by this lifechanging disease. Through Sadie, I’ve learned about the promising research potential for Rett. RSRT has made amazing progress so far and I am confident that RSRT has the ability to truly change lives.”

As chair of the Tull Family Foundation, Ms. Tull is a deeply committed and thoughtful philanthropist with interests in life sciences, education, the safety of children, and other areas. She is also the founder of First Light Capital Group, an investment firm focused on developing and supporting female entrepreneurs predominately in the technology and pharmaceutical industries. In addition to serving on the RSRT board, she is a trustee of the Children’s Hospital of Pittsburgh Foundation, the Pittsburgh’s Carnegie Science Center, the Board of Visitors for the University of Pittsburgh School of Medicine, and The Jackie Robinson Foundation. She is also an acclaimed photographer whose subjects have included numerous celebrities. Her images have been featured in Vanity Fair, Rolling Stone, and other national publications.

Rett syndrome, which afflicts 350,000 people worldwide, is caused by random mutations on the MECP2 gene located on the X chromosome. The disease primarily affects girls and takes effect in toddler-hood following a normal infancy. As Rett progresses children regress and lose acquired skills such as walking, talking, and control of their hands. Scoliosis, extreme anxiety, tremors, seizures, hyperventilation, and digestive problems are common. Most individuals with Rett live into adulthood, requiring round-the-clock care.