Skip to content

CASK Coalition

What is the CASK Coalition?

The CASK Coalition is a group of like-minded collaborative CASK research non-profits. The aim of the CASK Coalition is to harmonize and mobilize the full force of CASK foundations toward advancing treatments and a cure for CASK disorders. Members of the coalition use their skills to assist one another, exchange ideas, share contacts and work together with the common aim of finding a treatment or cure for CASK disorders. 

Please visit our website for more information thecaskcoalition.com

Why a coalition?

With roughly 300 confirmed diagnoses, the CASK community is small and dispersed across different countries. United by a Facebook group that offers a critical platform for sharing information and providing support across CASK families, the community is currently represented by multiple foundations spanning the globe.

Given the size of the community and the enormous obstacles to advancing treatments and a cure for rare diseases, the CASK community would benefit from collaboration in defining a community-wide research Road Map, promoting unified data collection, and undertaking fundraising and outreach collectively. 

MISSION

To facilitate collaboration between CASK non-profits and researchers in order to accelerate the path to a treatment or cure for CASK disorders. To enable one louder voice of advocacy rather than many small voices.

VISION

A world where a treatment or a cure for CASK disorders is found quickly as a result of collaboration.

VALUES

Committed – Collaborative – Expeditious

What does it do?

The CASK Coalition provides a platform to streamline collaboration across CASK foundations who become members, reduce redundancy across foundations for activities that can be globally managed, and promote greater engagement with the global CASK community to advance research. We advocate best practice and transparency within the CASK non-profit arena.

CASK Coalition roadmap

What have we achieved together so far?

Only being established in 2023, The CASK Coalition has already achieved so much together. From organising a successful first global fundraiser CASK Race for Research to launching an ambitious project, CURE CASK, to provide the female population with a gene therapy and raising $100,000 towards this. Their members, collectively, are part of larger organisations, such as Genetic Alliance, Eurordis, Global Genes and UKRET. Our motto is “Achieving More, Together”. 

Read more about our current member projects here:

CURE CASK
Therapeutic Drug

Our members

The Angelina CASK Neurological Research Foundation is based in Australia and is a founding member of the CASK Coalition. They have raised over $150,000 AUD since establishing in 2020.

The CASK Research Foundation is based in the UK and is a founding member of the CASK Coalition. They have raised £50,000 since March 2022.

Association Enfants CASK France is based in France and is a founding member of the CASK Coalition.

The Angelina CASK Neurological Research Foundation is based in the USA and was founded in 2022.

CASK Luxembourg is based in Luxembourg.

Membership

Any non-profit whose main purpose is to fund scientific research into CASK disorders may apply for membership of the CASK Coalition.  To learn more visit thecaskcoalition.com

Why join the coalition?

By becoming a member of the CASK Coalition you will:

  • Benefit from a wealth of knowledge collected over years by member organisations. 
  • Expand your network
  • Be able to use an already established fundraising platform for your annual fundraiser
  • Contribute to the Global CASK Road Map
  • Be invited to the biannual CASK catch up meetings
  • Benefit from the shared successes of other member organisations.

What are the commitments?

The CASK Coalition will not undertake redundant activities with CASK foundations, nor will it independently fundraise for its operations or activities, unless this is determined to be of value in the future. Key activities of the CASK Coalition include:

  • Overseeing the CASK Data Collection Program (RARE-X) and other community-wide programs, including serving on the RARE-X PAG, recruiting CASK families to participate, and sharing accurate information with the community.
  • Participating in global fundraising activities such as the annual fundraiser where funds would go directly to respective CASK foundation members.
  • Assisting in the organizing of an international CASK research conference.

Any non-profits interested in becoming part of the CASK Coalition are advised to read How do I join section at thecaskcoalition.com

If you are an individual considering creating a CASK research non-profit in your country we would love to hear from you to see how we can help.

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