DEAF-1 Genetic Therapy Research

I didn't think a cure was possible, but it is.

Since the time I realized Oliver was autistic, over 7 years ago, I did every possible thing I could to help him connect with me and the world. I moved countries, changed careers, and sacrificed countless hours researching, implementing, and trying every single thing in the book and by word of mouth that I could get my hands on.

And Oliver is a beautiful human being, but his many challenges make life for him and our family dangerous, unpredictable, and heart-breaking at times. He is 9 years old, uses a speech-generating device (like an ipad) to speak in one word requests mostly, and has not a single friend. As much as we try to stretch it, his world is small. He does not sleep through the night. He gets upset often for reasons we can't detect. He gets into moods of rage and tries to hurt himself and others. I would do anything to help him, and I do. But all the therapeutic approaches in the world are not enough to help him become an independent and self-sufficient human being who can be at peace most of the time.

Oliver did a full genome sequencing a few years ago and was diagnosed with a de novo (not inherited) genetic mutation called DEAF-1. This mutation caused his autism and many other characteristics, including his non-verbal presentation aka apraxia of speech. You can learn more about DEAF-1 here. We recently discovered the work of Dr. Alysson Moutri out of UCSD on brain organoids. He is replicating the genetic mutations and creating something of a small brain in order to test different medications and crispr gene editing. His lab does many things, but one focus is on resolving the genetic causes of autism - a potential cure.

This fundraiser is to raise money to fund the initial research needed to create some proof that he can replicate the DEAF-1 gene and possibly treat it.

An organization of parents in Brazil (DEAF-1 Institute) has raised 90k to start the first year of research. We need 10k more to officially start the research this year. I included $500 for fees with money transfers. We are so close.

It will take 2 years of research to gain enough evidence from the initial research. After this, they can apply for NIH grants. Pending NIH research results, they can get funding from medical companies to complete the research. It is a long road, but we are starting. They need 10k to finish funding for year 1, and 100k to complete funding for year 2. All in all, the research will take millions and millions of dollars and perhaps span 10 years, but this is the most promising research I have seen and it is already starting! If you would like to hear directly from Dr. Alysson Moutri and his lab, you can see a video here.

You can donate here. There is a GoFundMe fee (2.9% + $0.30 per transaction, also see here about opting out of the GoFundMe tip).

You can also donate directly to his lab using this link: The fund number and title is RP150 – DEAF1 Gene – Pediatrics Research Support. If you donate directly to his lab, the donation is tax-deductible, and there is no GoFundMe fee. However, I won't be able to see it as directly. Please reach out to me and let me know you donated! I'll keep you updated on our research progress.

Please help in any way you can, even $5 will help us get to our goal.

Update: My friend Maiko Shimizu (maikoshimizu.com) has offered to do a digital portrait for anyone who donates $200 or more from March 18th to March 31st, 2023. Please reach out to her and me with a few headshots of your child, partner, or favorite celebrity after you donate.

I believe if we all give a little, we can achieve this goal.