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Stand with Sara, Cure FOXG1

Nikhil Shingte / FOXG1 Fundraising Teams

Our mission is to bring together friends, family and kind hearts to help find a cure for FOXG1 syndrome. Here is path to cure

We are in step 4 of this path. By raising funds and spreading the word, we believe we can make a big difference, to lives of people suffering from FOXG1 syndrome and other related neurological disorders .
P.S. If you want to make anonymous donations, please choose 'Yes, make my gift anonymous' on donation page and uncheck checkbox on following page which says 'Display my name on foxg1 fundraising team page'

  • $1,507

    Raised

  • $100,000

    Goal

  • 14

    Supporters

Recent Transactions

About Stand with Sara, Cure FOXG1

About a couple of years ago, my daughter, Sara, now 2.5 years old, started missing developmental milestones. After a plethora of blood work, MRIs, EEGs, and genetic tests, Sara was diagnosed with FOXG1 syndrome. This rare neuro-developmental disorder causes global developmental delays, seizures, movement disorders, sleep issues, gastrointestinal issues, among others. I still remember that day, as if the ground beneath my feet had fallen away. She is one of only 1,000 people around the world with this rare disease.

Since then, the journey has been challenging and enlightening. This diagnosis has brought a wealth of emotions and a commitment to seek the best care and support for our little girl. Her strength and smile in the face of such adversity give us the courage to fight, every day.

We are living in a world of modern innovations and AI. Novel drug discoveries and gene therapies are within the realm of possibilities. At the same time, developing an FDA-approved drug is a mammoth task, as I have learned. Gene therapies are multiple times harder to develop due to the sheer complexities of human biology.

BUT, it’s possible! Gene therapies for other disorders, such as SMA, Rett syndrome and other diseases, have been developed and approved by the FDA. If I have learned anything from this journey, it is that we can do anything we set our minds to.

Please consider donating to the FOXG1 Research Foundation. Please reach out for any questions related to corporate matching programs for donations. Your help can make a world of difference in the lives of people suffering from this disease.

Awareness brings understanding, and understanding brings hope.

Thanks
Nikhil Shingte

P.S. For those of you who wish to learn more about FOXG1 syndrome and how it affects individuals and their families, as well as any questions related to donation options, please reach out. I am more than willing to share our experiences.


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