Beyond Measure.

Our FOXG1 Research Foundation Newsletter is hot off the press today. We take a look back at our incredible first year and all that we've accomplished; and we look ahead to 2019. After clicking "send" to our entire email database, I took a moment to pause and think about what we're doing. Like Dorothy to Toto, "We're not in Kansas anymore." I said to myself, "We're not in the music business anymore."

I never thought I would be the President and co-founder of a research foundation. I never thought I would be immersed in the world of genetic science and biotechnology. I never thought I would be saying words like phenotype, characterization, small molecule, organoids, (spell check doesn't even recognize that one), and iPSC lines on a regular basis.

But here I am, and with the motivation of saving my little girl's life there's nowhere I'd rather be. And if I should say so myself, our little global foundation is kicking ass! I'm so proud of what we've accomplished, I'm overwhelmed by the amount of work and fundraising we have to do to get to our goal - a cure. Not too lofty, heh? I am also confident that we can and we will.

I've been saying the words "beyond measure" a lot lately when talking about the potential impact of our research. I'm realizing more and more how incredibly important all science is. Every dollar donated to all science can have an impact that is simply beyond measure. Every scientist funded, every collaboration of researchers, every minute spent in the lab can change the blueprint of human life. That's another sentence I'm hot on - change/improve the blueprint of human life.

I sit at my desk with my long-ass to-do list. Newsletter- sent! Cross it off the list. I carry my 50 pound seven-year-old totally disabled daughter around, I wipe the drool from her mouth, clean her mic-key button on her belly so it doesn't get infected, I administer a bevy of anti-seizure medications through her g-tube, and I plug away with an incredible team of FOXG1 parents to drive the research forward to change the face of this awful rare genetic disorder - not just for Josie, but for every child in the world, today and in the future, with FOXG1 syndrome.

It doesn't stop there. Our work might just improve the lives of millions of people.

You see, Foxg1 is one of the first and most critical genes in brain development. It’s a transcription factor that "turns on" the proteins needed for many other genes. Neuroscientists believe that if we can fix Foxg1, we can potentially help solve other disorders like autism, schizophrenia, Alzheimer’s, brain cancers, and more.

Talk about beyond measure. Talk about improving the blueprint of human life.

So back to our happy shiny newsletter. We kicked it off with a year in review. This is our pinch-myself-we-really-did-this list of accomplishments in our first year.

As I'm sure many a spiritual guru have said.. the past shall pave way for the future. We pushed out of the 2019-gate strong, with a new research project funded! More science. More answers. Add the word "astrocytes" to my growing vocab.

We welcomed our newest board member, Angie, who has basically come into my life like an angel removing a 2000 pound weight off my shoulders. The impact of having help and having a strong team is, well, beyond measure.

We dropped a teaser about our upcoming patient registry, which is a really big deal. When my co-founder @NashaFitter and I did rounds around Cambridge, Massachusetts getting advice from biotech professionals, the one thing they all said is "Get your registry going. Make it strong. Without a global patient registry, no pharmaceutical or biotech is going to take you on for clinical trials." Nasha, and @EllieBrimble, Jeff from @Beneufit, and our team worked so hard in 2018 to build it, and we're launching it in two weeks.

More data. More answers. More impact.

We added a call out to Foxg1 parents for help. It takes a village. Strength in numbers.

We posted our 2019 fundraising goal. We have a host of research projects currently being reviewed by our Scientific Advisory Board. We can guesstimate that in order to fund the-approved projects, plus nest steps of exiting projects, it will take about $2M in 2019. No one said saving lives was going to be easy, but it sure is worth the effort and money. The price tag to improve the blueprint of human life.

This boy is the reason why. If all of our work can give this little fighter the life he deserves, it will all be worth it. Kyler, you are the Muhammad Ali of our community.

And finally, a special shout out to my boy @DominickTolipani for dedicating so much time pro-bono, designing our website and much more. You are a rock star.

For anyone that wants to help, here is the link to our Donate page. DONATE HERE .

Thank you so much! When you donate, to help us find a cure for FOXG1 syndrome, or to help any research, you're doing your part to make an incredible change. It might be your donation that funds the scientist that comes up with the discovery that leads to a cure.

Always remember, the impact of research is beyond measure.