Angelina CASK Neurological Research Foundation (AUS) and (USA)

We are pleased to announce that the ACNRF Australia 2024 Annual Gala Event successfully raised an impressive $64,000! Our heartfelt gratitude goes out to everyone who contributed, whether through donations, purchasing raffle tickets, or attending the Gala. A special thanks to our Sponsors for their unwavering support and to Brooke McDonald for her invaluable help in making this event a success. Your contributions are instrumental in furthering our mission to find a treatment for those diagnosed with CASK and in supporting the First Australian Research Initiative led by Professor Ernst Wolvetang at the University of Queensland. Thank you! #fundraiser #raredisease #curecask #research Ernst Wolvetang The University of Queensland Brad Mackay Robert Woodford Scott Lockie Aussie Industries Cintia Mayel Brooke M.

*Exciting News* ACNRF Australia is thrilled to announce a First Australian CASK Research Initiative. This Research will involve the development of a series of Patient-Derived Induced Pluripotent Stem Cells (cells created from cask patients blood). These cells will play an integral role in research to unravel the mechanisms underlying different CASK mutations, with the ultimate aim of conducting drug screening of a wide range of drugs and compounds to identify those that may be effective in mitigating the disease’s effects. This will be led by Ernst Wolvetang and Stefan Thor of The University of Queensland ACNRF was the first CASK charity to fund a Preclinical Study of a FDA Approved Molecule lead by Konark Mukherjee that may improve the quality of life of both boys and girls with CASK . ACNRF Aus and USA together with CASK Research UK and Association Enfants CASK France established the CASK Coalition and funded the Initial Phase of the First Gene Therapy Project into CASK (reactivating silenced gene in females) following promising research in other similar rare diseases like retts and CDKL5 led by Kyle Fink team at UC Davis California. We together with our CASK Coalition partners Laura Hattersley and Thierry Kervella will continue our commitment to improving lives of those with CASK driven by the belief that collaboration and community give our children the best possible chance . https://lnkd.in/gXqwYEpT

Global Genes contacted our founder, Giovi Moschoudis to share her journey as a mother to Angelina, who has CASK, and to discuss why she established ACNRF along with the achievements and progress being made for our CASK community. Thank you, Global Genes for spreading the word about CASK and raising awareness of this rare disease https://lnkd.in/gTFgJwHQ

Join us on Saturday 21st September and support Australian based CASK Research! Purchase your tickets by 9 August to help change the lives of those affected by CASK. We can’t do this alone, we need your support. Go to https://lnkd.in/gH54WQBJ to purchase tickets. #fundraiser #makeadifference #raredisease #curecask

Join us for a special Fundraising Dinner on Saturday, September 21, 2024, at the Grand Roxy Brighton Le Sands! We're excited to invite you to an evening that will shine a light of HOPE, ignite COURAGE, and pave the way for a BRIGHTER TOMORROW for those affected by CASK disorders. Please support us and this extraordinary cause, to purchase tickets and sponsorship packages please click here https://lnkd.in/gH54WQBJ Let's unite to make a difference for each of our CASK heroes. Together, we can make a positive impact and bring about meaningful change.  Please share this post ! We hope to see you there. 

We wish to express our gratitude to Milford for their support via Milford’s annual giving programme. Our foundation recently received a grant of $2,000. These funds will be put towards the costs of CASK awareness and education and the costs associated with Fundraisers and the like. Milford is an active and outcome focused funds management business, managing around $20 billion for investors in Australia and New Zealand. Their purpose is to grow the wealth of their clients and to make a positive contribution in the communities in which they operate. It is this “contribution to community” which has seen the Angelina CASK Neurological Research Foundation benefit. Thank you Milford Brad Mackay

Our Founder Giovi Moschoudis was featured in Western Weekender: “When I began to get in contact with other CASK families and realised that children were passing away, that’s when I thought, I don’t know where Angelina fits and I’m not going to wait and see. We need to do something”, “A lot of funding is going into huge things like cancer, which I understand, but there are over 7000 rare diseases that children are dying from and there’s no research, because it is limited….It’s just about creating that awareness that these rare diseases exist as well and every child deserves to have a quality of life”… Thank you Cassidy Pearce and Western Weekender for highlighting CASK and our Global CASK Race for Research and the need for change and awareness of all rare diseases. #raredisases #rarediseaseawareness #caskgenemutation #caskcoalition #curecask #research #community Rare Voices Australia Global Genes Associate Professor Wendy Gold Elizabeth Emma Palmer NSW Medical Research Stefan Thor Ernst Wolvetang Konark Mukherjee Dr Charles Moschoudis Melissa McIntosh MP Jill Silverman David Segal Kyle Fink Laura Hattersley Thierry Kervella Paula Alanis Correa Adan Sarki

Life with CASK documentary out now. Please share the voices of our CASK families. #raredisease #rarediseaseday2024 #lifewithcask

Meet Bella, our Dragonfly mascot! Bella is part of our new #caskcoalition logo and symbolises the beauty and fragility of our children. Bella’s significance extends to medical awareness, as often those diagnosed with MICPCH have a cerebellum shaped like a dragonfly, expediting diagnosis. As well as funding research all members of the CASK Coalition are passionate about raising awareness outside of our community and improving diagnosis rates. (the CASK coalition is an umbrella group of 4 CASK non-profits prioritising collaboration as a way to accelerate the path to a treatment or cure) #BellaTheDragonfly #CASKCoalition #cerebellarhypoplasia #cerebellum #rarebeauty #cask #caskgeneawareness #caskgenemutation