Rett Syndrome Research Trust Receives $1M Donation

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by Marisa Wexler MS |

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The Rett Syndrome Research Trust (RSRT) has received a $1 million donation to help develop a cure for Rett syndrome.

The gift, provided by Alba Tull, philanthropist and co-founder of Tull Family Foundation (TFF), will support the RSRT’s CURE 360 initiative, a project that aims to be “attacking Rett from every angle” to find treatments. The TFF is committed to philanthropy efforts across life sciences, education, and children’s safety.

Nearly all cases of Rett syndrome are caused by mutations in a gene called MECP2. The RSRT is helping to develop 16 therapeutic candidates that seek to correct disease-causing problems with MECP2 through a half-dozen different strategies, including delivering a healthy copy of the gene to cells in the body, changing how the gene is read within cells, and gene editing to correct the disease-causing mutation.

Since the nonprofit organization was founded in 2008, it has awarded $62 million to scientists doing Rett syndrome research.

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“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 said in a press release.

Tull has served on the RSRT’s board of trustees since 2016. She was inspired to get involved by a friend whose daughter was diagnosed with Rett syndrome.

“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,” Tull said.

Tull’s donation is being made through Reverse Rett Los Angeles, an annual gala hosted by families of children with Rett syndrome. It has raised almost $12 million for RSRT since it started in 2009.

“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 Monica Coenraads, CEO of the RSRT.

“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,” Coenraads added.

According to the RSRT, the organization has spent an average of 95% of every dollar donated on its research efforts.