Walk with us for WWOX patients all over the world this February!

Join us in raising awareness and funds for WWOX-related Diseases by walking at least 16 miles this month.

HOW?

Create your personal fundraising page, and share your story. Track your walking miles and share your progress on your page with your friends and family. They can also join you by sharing your page, their mileage and/or creating their own fundraiser page. When sharing on social media please share the link and use hashtag #walksforwwox24 .

WHERE?

You can join us from anywhere in the world!

WHY?

Walk, share and donate for a better future for children living with WWOX diseases by helping us fund critical research initiatives. The WWOX Foundation has identified promising therapies that could improve the lives of our little warriors and their caregivers. However, we currently do not have the funds to properly test and deploy these therapies. We need your help!

WWOX is a gene that codes for a protein that plays a critical role in brain function. Mutations of this gene can lead to ultra-rare forms of childhood epilepsy known as SCAR12 and WOREE Syndrome. These diseases first show up as seizures within the first few months of life. From the first seizure, symptoms continue to grow. Children with WWOX deficiency have many difficulties including eating, breathing, digesting and countless others. The majority of children have no speech or mobility and rely on their caregivers for every facet of their life. Children with the most severe type of genetic variants will not live through their childhood.

Currently, there are no approved treatments for children with SCAR12 and WOREE Syndrome. However, there is promising research that that could dramatically improve these children’s lives. To pursue these new research initiatives the WWOX Foundation needs your help. As a volunteer-run nonprofit each dollar donated goes toward our research and advocacy programs to create a brighter future for these children. Help us kickstart our 2024 research projects by donating and sharing!

Projects we seek to fund:

$25,000 – Creation of new stem cell lines to better understand the spectrum of the disease and screen for potential treatment options

$25,000 – Fund WWOX patient registry to gather important patient data to guide our research.

$75,000 – Drug Repurposing Screening Study to determine if any existing FDA approved drugs can be repurposed to improve symptoms of patients with WWOX deficiency

$250,000 – Conduct a small (~10 patients) clinical trial to determine efficacy of a targeted re-purposed drug candidate.

WALKS FOR WWOX 2024

For a brighter future for children and families living with WWOX-related diseases.

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