Our Board of Directors include parents who have a child with CASK, and each are professionals with skills sets that contribute to help drive our vision to advance medical research with the foremost objective being to find a cure for CASK gene mutations and associated conditions related to CASK.
Each of our members are volunteers and dedicate their time to this extraordinary cause.
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Giovi is the Founder of the Angelina Cask Neurological Foundation (ACNRF), established in both Sydney, Australia, and California, USA.
Giovi is married to Charles Moschoudis, and they have two children Aydan who is diagnosed with Autism and their youngest daughter Angelina, is diagnosed with CASK Gene Disorder.
An experienced lawyer and leader, Giovi has worked in both the private and public sectors before founding ACNRF. She is a genuine, focused, and enthusiastic leader, committed to achieving the foundation’s goals of improving the quality of life for those diagnosed with CASK.
A passionate advocate in the rare diseases space, she seeks to garner support from both private and public sectors to facilitate collaboration within the scientific and medical communities, thereby advancing innovation in the diagnosis and treatment of CASK Gene Disorders and related conditions.
Tara McCarton is a mom to 2 beautiful girls, Vivienne (8) and Audrey (10 almost).
She is married to James (retired NYPD) and they reside on Long Island in NY. Audrey was diagnosed with a CASK gene mutation mid 2017.
Tara currently works full time at an Investment Bank in New York City and has been in Finance for 25+ years.
She was also an OnGoing Service Coordinator for the Early Intervention program in NY and a published author of the children’s book, The Wish.
Tara is currently on the Board of Directors for the Anchor Program Fund, which supports special programs for her daughter’s year round Camp, Camp Anchor. On that board she is on the Fundraising and Grant/Sponsorship Committee.
She is also co-chair of the Ability Network at the bank she works at with almost 1000 members and organizes events to support its mission of inclusion of people with different abilities.
Tara and her family have been on the George to the Rescue TV show and The Today Show on NBC spreading awareness of Special Needs and resources that are available to families.
To read more about #audreystory please visit her website at www.audreymccarton.com
Christy Naughton is a Mother of three girls, Scarlette (8), Ivy and Ellie (twins, 6).
Ellie was diagnosed with a CASK gene mutation in 2019. Christy is a Registered Nurse and provides nursing care for Ellie and works as a triage nurse on the weekends.
Christy has been a nurse for 25 years, caring for our country’s Veterans for 23 of those years. Christy serves on the St. Francis School board, where her children attend school.
Christy is a strong advocate for inclusion, with her daughter Ellie being the first inclusion student at her school. She brings her determination, intuition and strong interpersonal skills and is honoured to serve on the ACNRF board.
John is qualified in both Genetics and Law. Having completed a Bachelor of Science Degree majoring in Genetics at the University of Sydney and later a Bachelor of Laws Degree.
John is a practising lawyer and Accredited Specialist. e is a former Prosecutor, and currently a director of a law firm, with offices in Canberra and regional NSW.
He was a Barrister for more than a decade, having appeared in hundreds of trials. John was also an Officer in the Australian Defence Force (Reserves).
In 2019, John completed a Master of Forensic Mental Health Degree through the School of Psychiatry, Faculty of Medicine, University of New South Wales. He was awarded the David Greenberg Prize in March 2020 for Highest Academic Achievement in that Degree.
John is currently undertaking a Doctorate.
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.
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:
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.”
