Letter from our Founder: A Difficult Day, a Deeper Purpose

I often cry during IEP meetings.

When the hard truths about my child’s struggles are reduced to “goals” and “objectives,” it’s almost impossible not to.

But a recent meeting was different.

It was Charlotte’s physical therapist who cried.

She shared, through tears, that not only had Charlotte not met her goals, but the data showed a continued decline in her ability to walk and stand. While I was prepared for this news—we live with her daily struggle—I never expected the tears to come from the other side of the table.

In that moment, I realized something powerful: we are not alone in this fight.

We are surrounded by devoted professionals who stand with us, battling the terrible monster of a disorder that is stealing our daughter’s abilities. Her tears were not a sign of failure—they were a sign of love, commitment, and shared determination.

I didn’t cry then. But later, I shed tears of gratitude for her tears—a testament more valuable than any goal met or milestone achieved.

This season, as we step into a time of giving, I’m holding onto that moment. It reminded me why this community matters so deeply—why your support is not just appreciated, but essential.

Because while FAM177A1-Related Neurodevelopmental Disorder (FRND) tries to take from our children, you help give something back: momentum, hope, and research that creates life-changing treatments.

At the FAM177A1 Research Fund, we are racing forward:

• Funding gene therapy development and drug repurposing

• Supporting breakthrough research at Yale University, the University of Portsmouth (UK), and the Hebrew University.

• Standing shoulder-to-shoulder with families who need community

  
  

But we cannot do this alone. Your year-end donation fuels the discoveries that will protect the hard-won progress of children like Charlotte, Cooper, Emma, Bella, and every FRND still waiting for answers.

As Charlotte’s therapist reminded me, this work is shared. It’s personal. It’s urgent. And every person who steps into this circle—professionals, parents, donors—helps lift these children a little closer to the future they deserve. You are part of that circle.

Next week is Giving Tuesday on December 2nd and we are thrilled to have a $10,000 match from one of our generous supporters. Join us on December 2nd to double your impact and bring us closer to a cure.

From our family to yours—thank you for giving fiercely, laughing loudly, and showing up with heart for our FRNDs.

With deep gratitude,

Jill Hawkins

Founder & President

FAM177A1 Research Fund