Children across the world are struggling. Each day they 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 is the cause of 2 devastating diseases, WOREE (WWOX-related Epileptic Encephalopathy) and SCAR12 (Spinocerebellar Ataxia-12).
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.
However, funding for the research has been completely exhausted. Due to the extreme rarity of this disease funding is hard to come by and we need caring individuals such as yourself to help the cause.
The WWOX Foundation is a charitable organization dedicated to promoting community awareness of WWOX-related syndromes and supporting scientific research that aims to develop effective treatments and ultimately cure the syndromes.
Newly Diagnosed?
Receiving your child's diagnosis can be extremely overwhelming and difficult to absorb. We understand what you are going through and would love to help you navigate this journey. You are not alone!
We and our network of families are here for you. If you are a caregiver to someone who has been diagnosed with WWOX related syndromes you can start this journey by following these simple steps:
2. Facebook Group
Join to our private Facebook Group, which is a great resource. You will be able to share your story and find support from families in the same journey.
3. Patient Registry
Fill out the WWOX Patient Registry. Our scientists are currently collecting data so they can have a better understanding of these syndromes and finally to find a cure.
4. Join the research
Explore the different ways of participating on the current research for a cure here.
If you are unsure of your child's diagnosis or need access to genetic testing , please visit Probably Genetic to receive no-cost testing for rare disease.
