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Rett Syndrome Research Trust

Philanthropist Alba Tull Makes $1M Gift to Rett Syndrome Research Trust

Alba Tull, philanthropist, founder of First Light Capital Group, and co-founder of Tull Family Foundation (TFF), has made a $1 million donation through TFF to the Rett Syndrome Research Trust (RSRT) to further the organization’s efforts to develop a cure for Rett syndrome, a devastating neurological disorder. Inspired by her friend Stephanie Bohn’s daughter who was diagnosed with Rett syndrome, Alba Tull joined RSRT’s Board of Trustees in 2016, where her leadership, vision, and support have dramatically helped the organization in its mission for a cure.

“Having served on the Board of Trustees for five years, I’ve witnessed firsthand how RSRT is innovating across research and carving a unique path to cure this heartbreaking disease,” said Tull. “It’s critical that RSRT has all the necessary tools in order to continue on the path to finding a cure for this terrible disease. I know RSRT will strategically employ their resources to push science forward while partnering with drug makers to accomplish their mission.”

Tull’s contribution supports RSRT’s CURE 360, a strategic plan to advance a genetic solution for Rett syndrome. The gift is being made through Reverse Rett Los Angeles, an annual gala hosted by LA-based families who have children with Rett syndrome. The event benefits RSRT and is the largest fundraiser for Rett research in the world. Since its initial event in 2009, Reverse Rett LA has generated nearly $12 million for RSRT.

“Alba’s gift is not only a testament to her generosity, it is also an indication of her belief in RSRT’s focused and collaborative methods with scientists and the biopharmaceutical industry,” said RSRT CEO Monica Coenraads. “Everything that RSRT does is in service of finding a cure for Rett syndrome, and we have a plan to cure Rett. Alba, and all of our supporters, want results, and we are tremendously optimistic about our prospects for a cure.”

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 the cascade of Rett symptoms arise, 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 Rett victims live into adulthood, requiring round-the-clock care.

In partnership with leading scientists and biopharmaceutical companies, RSRT is attacking Rett from every angle by pursuing six curative strategies: gene replacement, gene editing, MECP2 reactivation, RNA editing, RNA trans-splicing, and protein replacement. The numerous opportunities to cure Rett are the result of RSRT’s singular focus and strategic decision-making, including rigorously evaluating the science and funding consortia of labs to promote collaboration across disciplines.

Today there are 16 MECP2 therapeutic programs in the drug pipelines of seven biopharmaceutical companies and eight academic institutions.

The Tull Family Foundation (TFF), founded by Alba and Thomas Tull, is committed to meaningful philanthropy across life sciences, education opportunities for women and girls and the safety of children. In addition to serving on the RSRT board, Alba Tull is a trustee at Children’s Hospital of Pittsburgh Foundation, Pittsburgh’s Carnegie Science Center and The Jackie Robinson Foundation. Recently, through TFF, Alba partnered with The University of Pittsburgh School of Medicine to create the Alba Tull Center for Medical Innovation, a new facility devoted to the study and advancement of neuro imaging and therapeutics.

About the Rett Syndrome Research Trust
RSRT is a nonprofit organization with a highly personal and urgent mission: achieving a cure for Rett syndrome and related disorders caused by defects in the MECP2 gene. Since its founding in 2008, RSRT has awarded $62 million, more than any other Rett organization in the world, to leading scientists pursuing targeted research on Rett. RSRT funds and spearheads global scientific and clinical activities advancing the most promising curative approaches. To date, every biopharmaceutical company pursuing a cure for Rett syndrome is doing so because they leveraged discoveries and resources incubated with RSRT funding. A highly efficient nonprofit, RSRT has spent an average of 95 percent of every dollar donated on its research program. To learn more, please visit www.reverserett.org.

About Rett Syndrome
Rett syndrome is a genetic neurodevelopmental disorder that predominately affects girls. Its symptoms strike typically between 12 to 18 months of age. The disorder is caused by random mutations in the MECP2 gene on the X chromosome. Rett syndrome is devastating, as it deprives young children of speech, hand use, and normal movement, leaving many individuals without the ability to walk or communicate. Symptoms can also include stress and anxiety, seizures, tremors, breathing difficulties, scoliosis, and severe gastrointestinal issues. Although most children survive into adulthood, every aspect of their daily living requires support. The impact on families and the health care system for specialists, corrective surgeries, therapies, and long-term care is significant.