Team Tessa - 2024 Race to 250K!

Amber Partisano / 2024 Race to $250K!

We are so hopeful!! We are closer than ever to a treatment for children—including our Tessa—suffering from FOXG1 Syndrome, a rare neurological and genetic disease. Thank you for your support!!

  • $270

    Raised

  • $10,000

    Goal

  • 3

    Supporters

  • 4

    Days Remaining

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About Team Tessa - 2024 Race to 250K!

Tessa Marie, our beautiful 2 ½ year old was diagnosed with FOXG1 Syndrome in March of 2023. While she is doing amazing and gets stronger every day, we still have our struggles and want more for her. FoxG1 Syndrome is a rare, neurological disorder that impacts brain development and causes severe developmental disabilities. With her diagnosis, Tessa has global developmental challenges that include low muscle tone, feeding difficulties, GI issues, and she may never have the ability to talk or walk on her own. What we do know is that Tessa is happy and extremely loved and fights and works hard every single day. We juggle eleven therapies a week with seven therapists; including Feeding, Nutrition, OT, PT, Speech, Aqua therapy at the pool and a special education class twice a week. In addition, we travel over the border to Burlington, new Lake Ontario in Canada for Tessa to do intensives for a week at a time. We also see a mass of providers at two hospitals, Oishei Children’s Hospital in Buffalo and Children’s Hospital of Philadelphia. 

The FOXG1 Research Foundation has come closer to a deeper understanding and is only a few years away from advancing meaningful treatments to FDA clinical trials that can be life-changing for individuals living with FOXG1 Syndrome. This is why we have joined the “Race to a Cure!” These Fox kiddos, children, and adults are extremely resilient and are fighters. We are extremely hopeful and know that with each day that passes we are getting closer to a cure. Please join us today and thank you for your support. Anything helps. xoxo