Nilan's Squad

Sabarish Venkatachalam / FOXG1 Fundraising Teams

Join me in this incredible story that is unfolding, together. Let's fund the scientists who are working on a cure and therapies to give all FOXG1 children the life they deserve.

  • $0

    Raised

  • $10,000

    Goal

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    Supporters

Recent Transactions

  • Sabarish Venkatachalam

    $50.00 monthly / 169 days ago

    Valued At: $600.00

    I wouldn't change you for the world, but I will change the world for you my dear Nilan.

  • Abirami Senthilkumar

    $50.00 monthly / 170 days ago

    Valued At: $600.00

    Once you choose HOPE, anything is possible

About Nilan's Squad

Our son, Yazhnilan Sabarish, who is just 7 months old and brings immense joy to our lives. Unfortunately, our happiness was overshadowed by devastating news from his genetic report. Our neurologist confirmed that Yazhnilan has FOXG1 syndrome, which has been identified in over 1,000 patients worldwide, with only two cases in Tamil Nadu and fewer than 10 in India and less then 25 in Canada.

FOXG1 is a crucial gene for brain development, and its absence or mutation leads to severe challenges. Most individuals with FOXG1 syndrome never learn to walk, sit, or perform basic motor skills, and many face significant feeding and speech difficulties. Around 70% experience severe epilepsy, and while there is no clear data on life expectancy, the oldest known person with FOXG1 syndrome is just 40 years old. 

As we grapple with this reality, we’ve learned about gene therapy, which offers hope for treating genetic conditions. In Yazhnilan's case, a specific technique could correct the mutation in his gene, potentially allowing him to develop like other children. 

I recently discovered the FOXG1 Research Foundation, which is actively working on developing a gene therapy for FOXG1 syndrome. Their talented team has shown promising results in preclinical studies, with clinical trials expected in the coming years. 

However, their vital research relies on donations. As Yazhnilan’s parents, we appeal to your goodwill to help support this important work. Your contribution will not only aid FOXG1 patients but may also advance research related to various brain diseases, including autism, Alzheimer’s, and epilepsy, impacting countless lives. 

Please consider supporting Yazhnilan’s fundraiser. Every donation makes a difference! ❤️ Thank you for your kindness and support.

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