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  • Writer's pictureNicole

One Thanksgiving Josie Will "Say" Thank You for a FOXG1 Cure

Josie was born the day before Thanksgiving 11 years ago and truly defined the meaning of giving thanks.

Allow me to rattle the reasons why I am thankful.

I am thankful for her pure joy. Her resilience. Her love. Her strength. Her energy. Her silliness.

I am so thankful that she gave me a purpose that I would have never known.

I am thankful that she gives me the courage to live my purpose, not only for her but for every child and adult in the world with FOXG1 syndrome, and more.

As a parent-led organization, we are actually improving the landscape for rare disease drug development. Why? Because we have no time to waste. We are helping contribute massively to science for major neurological diseases like autism, Alzheimer's, brain cancers, and more. No joke. Our work has the potential to solve major disorders that affect millions of people and knowing that fills me with even more motivation and inspiration - and gratitude.

I was able to dive in because of Josie. I am able to put all I have into this every day because of Josie. I will simply do anything for Josie. Why? Because she freakin' deserves it.

When we all sit at our Thanksgiving table and we give thanks, I can't help but wonder what my - now 11 year old - little girl wants to say.

I wish - so hard - that she could give thanks for the ability to say what she's thankful for.

Ironic, isn't it?

She can't say what she wants to say.

She can't rattle the reasons why she is thankful.

Wait, folks, there's more.

She can't even eat the food at the table. She cant say "pass the sweet potatoes." She can't go for seconds of the pumpkin pie - like her mama. She can't eat her own birthday cake.

If it were Josie's turn to give thanks at the table, what would she say?

She deserves to say thanks for the normal 11-year-old girl stuff - like her friends, her camp, maybe the dance competition she just won.

She deserves to give thanks for little things - the things we all take for granted, like just to be able to say what she wants to say.

You know what I think? You know what would be so Josie?

I bet if she could join in the gratitude game, Josie would rattle the reasons why she is thankful longer than anyone else.

She would keep going and going. She would make us see things to be grateful for that are right in front of us. She would make us see what we already have. She would give us all a moment of pause to feel a deeper level of gratitude than we knew possible. She would enlighten us all. She would raise the vibration of the room.

She would make everyone forget anything they don't have and only focus on what they do have.

Josie deserves her turn at the Thanksgiving table.

As her mom and her voice, I want to say how thankful we are for everyone who helps us in any and every way towards this unrelenting mission to improve the lives of every child in the world with FOXG1 syndrome.

While she is my deepest motivation, we know we are here for a reason far greater than ourselves.

We know we've built the foundation that will improve countless lives. Not just for FOXG1 syndrome, but for rare diseases, for childhood neurological diseases, and for major brain disorders. This is for children we won't even know one day, and heck, they might not even know what would have been.

There will be children rattling the reasons why they are thankful who will say, "I am thankful for my cure."

Don't get me wrong. I wholeheartedly believe the work we are doing will make a difference for Josie. We're moving fast, but more importantly we're working smart. We don't have time to waste.

And we have the team of all teams. The scientists, the clinicians, the partners, the parents, and the donors. Every effort comes from a place of love. Every effort also comes from a place of believing we will do this.

Every donation matters. Everyone who has any part in this incredible mission matters more than I can ever express my gratitude for.

It is hard to explain what this purpose I am able to live feels like like. I can just say that I have Josie to thank.


Hear Josie


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