Nasha Fitter Shares what’s in store for 20222, the most exciting year to-date for research for FOXG1 syndrome.
HAPPY NEW YEAR!
I am Nasha Fitter, the co-founder and CEO of the FRF.
I am humbled by what we have accomplished in 2021 and excited about our goals for 2022.
Thank you all for your support, funding, and love this year. We raised nearly $3M in 2021 alone are well on the path to curing FOXG1 syndrome.
You all received an email with our 2021 Impact Report,
now, let’s look ahead to what will be the most exciting year for FOXG1 syndrome yet!
2022 Plans for the FOXG1 Research Foundation:
FOXG1 Clinical Trial:
We will be launching the first clinical trial for FOXG1, focused on children with uncontrollable seizures. More news on this soon.
FOXG1 Scientific Papers:
Our investments in basic science to understand the FOXG1 gene have led to breakthroughs that are leading to multiple publications, giving pharma critical information needed to find a therapy,
Our digital NHS with Ciitizen that more than 100 parents participated in, and our survey platform will yield at least five major publications written by the top neurologists in the world - again, something that pharma needs to create therapies.
FOXG1 Gene Therapy:
We will see news coming from Taysha Gene Therapies on the treatment the are creating and work from Nationwide Childrens - the team that created the successful gene therapy, Zolgensma for SMA.
FOXG1 ASO Therapy:
You may have heard about the antisense trial for Angelman Syndrome; we have filed our own provisional patent on a FOXG1 antisense treatment, and have started testing in stem cells. If successful, this is the final step before toxicology studies and FDA submission to start a clinical trial.
FOXG1 Drug Screening Projects:
We will begin screening thousands of potential drugs on not one, but three drug discovery platforms - on zebrafish and on neurons
FOXG1 and CRISPR:
We are plunging into next generation science with CRISPRA - activating the FOXG1 gene at the DNA level.
FOXG1 Precision Medicine Platform - The Lee Lab
We will always continue our funding of basic science to ensure we are developing a precision medicine approach to truly understand each FOXG1 mutation. We continue to be lucky by the commitment of FOX child Yuna’s parents - Dr. Soo and Jae Lee who are finding breakthroughs and working with all our other labs and biopharma partners.
FOXG1 Caregivers Conference 2022
For our families - the heart of our community - we will be hosting our first Caregivers Conference in the fall of 2022, where we can come together, talk not just science, but ways to raise our children.
FOXG1 Global Clinicians Network
And we will be sowing the seeds of a global clinician network so no FOXG1 child in the world is left without help, and when ready, we can begin clinical trials in multiple locations globally.
FRANKIE THE FOX!
And we don’t just innovate in science, let’s not forget Frankie the Fox! We will continue building on our beloved mascot - the character that comforts us, and gives us courage, while explaining to the world that children with disabilities are beautiful. Keep an eye out for more Frankie! And check out the Store on our website and make sure you have Frankie with you wherever you go!
Heartfelt Thank You
None of this would be possible without:
our donors,
our parents who have spent time taking surveys, signing up for the Ciitizen NHS, and even joining the stem cell biobank,
our scientists - who are both brilliant and dedicated,
our Scientific and Business Advisory Boards,
Our partners, the pro-bono help from talented people and incredible organizations.
and our amazing FOXG1 Research Foundation team.
We are in an era of medicine where curing disease will be done by intervening at the genetic level and our foundation is on the cutting edge.
I wish you a happy 2022, and let’s continue to remember that a small group of dedicated people can make history. We will find a cure for this disease.