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Press Release


The WWOX Foundation launches global fundraising campaign

"Developing a Gene Therapy to cure WWOX-related syndromes"


1st October 2020 – The WWOX Foundation today announced it had launched a global fundraising campaign to continue work to find a cure for two diseases which devastate the lives of children and their families.

The funding will enable the existing preclinical research to continue and obtain the assistance of a third-party organisation to gain regulatory approval to proceed with a clinical trial.

What is WWOX?

An extremely rare recessive mutation of the WWOX gene causes a deficiency of this protein which has a severe impact on brain development. Each day affected children struggle to breathe, to see, to eat, to sleep, to walk and to talk. They suffer from onslaughts of countless seizures and fail to develop as a typical child.

The cause is hidden deep in their DNA in a gene called WWOX. Mutations of the WWOX gene are the cause of two devastating diseases, WOREE and SCAR12. There are only 58 known cases worldwide. These diseases are stealing the futures of these children. The average lifespan of children with severe cases of WOREE syndrome is only 4 years of age.

But there is hope. Researchers from around the world have banded together to find a cure. Recent laboratory testing has proven that mice with a WWOX mutation can be cured using a gene therapy treatment. However, funding for the research has been completely exhausted. Due to the extreme rarity of this disease funding is hard to come by, especially in 2020 with the Covid pandemic.

About The WWOX Foundation

The WWOX Foundation was formed by a group of parents with children affected by the devastating syndromes associated with WWOX deficiency. It is the aim of the WWOX Foundation to raise awareness of the syndromes resulting from mutations of the WWOX gene and to provide clear and easy to understand information to newly diagnosed WWOX parents and provide an ongoing support network where parents can gain valuable insights and advice from other parents.

Furthermore, it is the aim of the WWOX Foundation to fund, promote and support medical research dedicated to developing effective treatments and ultimately curing WWOX related syndromes.

The WWOX Foundation is based out of Sydney, Australia, where the founding members live, and it is for this reason that the donation target of $300,000 AUD (approx. £165,000) is in that currency.


Johann Mentz

Mobile: 0412996250


United Kingdom

Charlotte Lloyd

Mobile: 07527 208998



Gwenaëlle LE MAGUER

Mobile: 0628355236


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