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Who We Are

Our Founder Story

The Angelina CASK Neurological Research Foundation (ACNRF) was established as a not-for-profit organisation in Sydney, Australia, on 18 August 2020, by Giovi and Charles Moschoudis. Motivated by deeply personal circumstances, the Foundation was created in honour of their daughter, Angelina, who was diagnosed in 2019 with a rare CASK gene disorder.

 

Less than two years later, on 20 June 2022, ACNRF expanded internationally when Giovi Moschoudis founded the organisation as an approved public charity in California, USA. Joining Giovi on this mission were fellow CASK mums Tara McCarton and Christy Naughton, both based in the United States, reflecting both the urgent need for global collaboration in rare disease research and their shared determination to drive change across borders.

 

Angelina’s journey began before her birth. At 34 weeks of pregnancy, a routine ultrasound revealed Agenesis of the Corpus Callosum (ACC)—the absence of the central structure that connects the two hemispheres of the brain. This part of the brain plays a vital role in motor, sensory, and cognitive functions. In simple terms, Angelina is missing the bridge that enables the left and right sides of the brain to communicate.

 

The medical prognosis was devastating. Doctors warned that Angelina was unlikely to ever walk, talk, or communicate, and that her quality of life would be profoundly limited. Giovi and Charles were given the option to terminate the pregnancy. Instead, they chose to give their daughter every chance at life.

 

In addition to ACC, Angelina was later diagnosed with Microcephaly (a smaller-than-average brain size), compounding her developmental challenges. Extensive genetic testing eventually identified the cause a mutation in the CASK gene(calcium/calmodulin-dependent serine protein kinase). This gene mutation, only recently discovered by the medical community, is exceptionally rare and affects neurological development in multiple, profound ways.

 

Today, Angelina continues to face significant challenges both intellectually and physically. She has difficulty in walking long distances and in different environments, talking, eating, and regulating her emotional needs are profoundly affected. She was also diagnosed with Epilepsy and has absent seizures.  Yet her resilience and the love and determination of her family remain the driving force behind ACNRF’s mission to fund and accelerate research that will improve the lives of children living with CASK and related conditions.

Our Mission

Improve the lives of individuals with CASK gene mutations through research, advocacy, and community connection.

To advance innovations in medical research related to the nature, diagnosis, prevention, and treatment of CASK gene mutations and related conditions.

Our Values

  • Compassion: Centred on the needs and well-being of CASK families.
  • Excellence: Committed to funding and promoting high-calibre scientific research.
  • Collaboration: Partnering with researchers, Global CASK and Rare Disease foundations and families.
  • Transparency: Upholding integrity in all operations and financial governance.
  • Hope: Inspiring belief in a brighter future through sustained effort and progress.

Our Charities

ACNRF - Australia

Registered Australian charity supporting families, research, and advocacy since 2020. 

Meet Our Team

ACNRF USA

US-based 501(c)(3) organisation supporting families, research, and advocacy since 2022.

Meet Our Team

Meet Tara and Christy – CASK Parents serving on our USA Board

Tara and Audrey

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Christy and Ellie

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DONATE AUSTRALIA
DONATE USA
SHOP AUSTRALIA
SHOP USA

Lavvina Thiyagarajan

MBBS

Lavvina is a clinical genetics fellow from NSW, Australia with a background in general paediatrics. She has practiced in multiple tertiary paediatric hospitals in Australia, both in general paediatrics and clinical genetics. She currently provides specialist advice for the NGO, Taking Paediatrics Abroad and is a member of GeneEQUAL, an inclusive research group aiming to improve accessibility of genetic testing and care for people with intellectual disability by co-design.

Lavvina’s clinical interests are in the genetics of autism, intellectual disability and immunogenomics. She is particularly passionate about including the patient groups she works with in research and healthcare decisions.

Lavvina is affiliated with The Children’s Hospital Westmead and the University of New South Wales where she is undertaking a Masters by Research, co-producing a model of genetic healthcare that aligns with the preferences of Autistic people.

Permission to Use Photos and Media

I, the undersigned, give my consent to the Angelina CASK Neurological Research Foundation Ltd and Angelina CASK Neurological Research Foundation Inc (ACNRF) to use photographs, videos, or other media featuring me, my child, or an individual under my legal guardianship (“Media Materials”).

This consent permits ACNRF to use these Media Materials for purposes such as:

  • Raising awareness of CASK-related disorders
  • Promoting ACNRF’s initiatives, campaigns, and programs
  • Sharing on ACNRF’s website, social media, newsletters, and other communication channels
  • Use in advertising, educational resources, and fundraising efforts.

I understand that these materials may be distributed publicly and may appear in print, digital, and other media formats worldwide and in perpetuity.

Terms and Conditions:

1. Usage Rights: I grant ACNRF the right to edit, adapt, or modify the Media Materials as needed for the purposes outlined above.

2. No Compensation: I acknowledge that no monetary or other compensation will be provided for the use of the Media Materials.

3. Release of Claims: I waive any rights to inspect or approve the final product and release ACNRF from any claims, liabilities, or damages related to the use of the Media Materials, including but not limited to claims of defamation, privacy, or copyright infringement.

4. Ownership Confirmation: I confirm that I have the authority to grant these rights for the provided Media Materials and that they do not infringe on the rights of any third party.

This authorisation is voluntary and may be revoked by written notice to ACNRF at any time, though I understand that materials already published may not be withdrawn.

“In some ways, that CASK-linked pathology is degenerative in nature provides a positive outlook. Because microcephaly in CASK-linked pathology progresses postnatally, there may be a temporal window when therapeutic intervention might prevent or slow further brain cell loss. Regression, even in adolescence, has also been observed in some cases of MICPCH [119], again offering the tantalizing possibility that a therapeutic approach might prevent such decline under conditions when degeneration is known to progress. The potential benefits of intervention might extend even further given that non-cell-autonomous toxicity could also affect functioning of the remaining neurons; reduction of such toxicity, especially when coupled with high-intensity rehabilitative measures [120], might offer real hope for a positive impact on functional outcomes.”   

https://www.mdpi.com/2073-4409/11/7/1131/htm