Our Vision & Mission

The GIGYF1 Research Foundation (GF1), is a Registered 501(c)(3) in the United States and is dedicated to accelerating the understanding of the biological basis, diagnosis, and treatment of GIGYF1-related disorders.

We are a parent-led, scientist-supported foundation dedicated to accelerating research, empowering families, and finding treatments for individuals living with GIGYF1-related disorders which is a newly recognized neurodevelopmental condition linked to speech delay, intellectual disability, autism, and learning challenges.

We believe the path to treatment begins with understanding the biology. Our foundation unites patients, scientists, and clinicians to illuminate the unknowns of GIGYF1, build a strong research ecosystem, and ensure every family has a voice in the journey ahead.

Contact Us
A lab technician wearing gloves holding a petri dish with a pink liquid inside, in a laboratory setting.

Strategic Priorities

Our strategic priorities for 2025-2027 include:

    • Fund basic science projects to determine what the GIGYF1 protein does and where it is active.

    • Develop cell-based and animal-based models (mouse, zebrafish)

    • Validate biomarkers and translational targets (IGF-1R, ERK, etc.)

    • Build an engaged scientific advisory board

    • Partner with academic labs

    • Identify & support post-doctoral researchers with dedicated projects on GIGYF1

    • Launch & grow a global patient registry

    • Host recurring family calls and educational webinars

    • Gather data on lived experience and symptom variability

    • Collaborate with clinicians to define measurable outcomes

    • Identify meaningful change for families

    • Prepare for natural history study through surveys and medical data collection

    • Raise initial $100,000 to support pilot studies & model development

    • Apply for rare disease grants and secure initial partnerships (e.g., Penn)

    • Develop donor community through peer to peer campaigns

Meet the Team

  • A woman with short, styled brown hair, wearing black glasses, a small earring, a grey shirt, and a black jacket, smiling against a plain beige wall.

    Rachel Groth, PhD

    VP of Translational Research, Neuren Pharmaceuticals Ltd.

    Scientific Advisory Board Member

  • Dr. Alexandra (Alex) Brooks, MD, PhD

    Boston Children’s Hospital/Harvard Medical School

    Scientific Advisory Board Member

  • A woman with long red hair wearing a black blazer, with arms crossed, smiling against a plain white background.

    Catherine Strandt, DMSc, MA

    Clinical Research Fellow, Global Genes

    Scientific Advisory Board Member

  • Heidi Keller

    Board Member, GIGYF1 Research Foundation

    Fellow Mom

  • A woman with dark hair and tan skin, wearing a black blazer and white blouse, sitting at a table with her hands clasped, smiling at the camera in a professional setting.

    Mansi Narang Tugnait, MBA

    Founder/CEO

    Ahaan’s Mom

Meet our Board

Hi, I’m Mansi- Mom to two boys Aaryaman and Ahaan. My journey is inspired by my son Ahaan who was diagnosed with ASD (autism spectrum disorder) when he was 2.5 years old. After achieving many typical milestones, including language and engagement, Ahaan had an acute regression and lost most of his skills, and withdrew into his own world, one where I couldn’t join him in no matter how much I tried.

We started on a journey of seeking answers and advocating- providing therapies, navigating IEPs, and getting him the support he needed to achieve his potential.

It wasn’t until a few months later when I pursued genetic testing. Whole genome analysis revealed a “VUS” as GIGYF1. The ‘variant of uncertain significance’ indicated that there was no established correlation between this gene and Ahaan’s condition, but it was noted that this is a relatively newer ‘candidate’ gene associated with autism and similar conditions.

Digging a bit deeper, I found research that gave me hope and the strength to keep pushing the envelope. After all, advocating for Ahaan had shaped a core value for me-to never give up.

I was relieved to have the support from Ahaan’s medical team and a network of inspirational doctors, neurologists and geneticists who helped connect me not only to researchers studying this gene, but also to other parents who are navigating the rare disease world. What started as casual connections gave me a path and clarity to help Ahaan and other children and families impacted by the rare GIGYF1 related disorders.

As they say, the journey of a thousand miles begins with a single step. I hope you will join us, as a parent, self-advocate, clinician, or researcher to further our collective science based understanding of GIGYF1 related disorders and therapeutic supports.

My name is Heidi, and I am the proud mother of two daughters. Our journey into the world of rare genetics began when we learned that our youngest daughter has a “variant of uncertain significance” in the GIGYF1 gene.

Like many families facing a rare or emerging diagnosis, we searched for information, research, and connection — and found very little. The uncertainty was overwhelming, but it also strengthened our determination to seek answers.

When we learned that a Patient Advocacy group was being formed for GIGYF1-related disorders, we felt hope. Hope for research. Hope for community. Hope for a future where families like ours feel less alone. Hope that we could gain the tools we need to advocate for our daughter.

In joining this group and serving on the Board, my goal is to build awareness, connection, and resources in the hopes that together, we can better understand, support, and advocate for anyone affected by GIGYF1-related disorders.

A woman and two children pose in front of the Taj Mahal in India, with the monument and numerous visitors in the background.