Cure CASK USA

ACNRF's objectives is to pursue the following charitable purpose(s):

1. To be a Foundation that values diversity, honest and integrity.

Cure CASK USA - Angelina CASK Neurological Research Foundation mission is to Improve the lives of individuals with CASK gene mutations through research, advocacy, and community connection. ACNRF Vision is to advance innovations in medical research related to nature, diagnosis, prevention and treatment of CASK gene mutations and related conditions. To advance innovations in medical research related

to nature, diagnosis, prevention and treatment of the CASK (calcium/calmodulin-dependent serine protein kinase) mutations, including but not limited to:

(i) The development of a cure for the condition and associated conditions relevant to CASK including microcephaly, agenesis of the corpus callosum, x-linked intellectual disability, disproportionate pontine and cerebellar hypoplasia;

(ii) The development of gene therapy, for patients diagnosed with CASK and associated conditions including but not limited to microcephaly, agenesis of the corpus callosum, x-linked intellectual disability, disproportionate pontine and cerebellar hypoplasia;

(iii) The development of treatments and therapies that may improve quality of life for patients with CASK and associated conditions;

(iv) The development of treatments and therapies that may halt and/or reverse the progressive degenerative conditions associations with the CASK gene mutation;

(v) The development of an electronic library to advance medical research into CASK and its association conditions by developing and maintaining a data base relevant to such research.

2. Develop and maintain clear, accurate and up to date information to assist in patient diagnosis.

3. Distribution of information to assist CASK diagnosed patients and their families to access contemporary innovative CASK research programs and therapies.

4. To raise awareness of this disease (CASK) amongst the community at all levels including but not limited to the medical profession, and public and private sectors.

5. To become an ambassador for innovation in the medical research with the objective of developing productive and sustainable relationships with both the public and private sectors in developing a cure for Cask.

6. To develop best practices in the medical research of the CASK mutation so as to improve the quality of life of patients diagnosed with the condition.

7. To attract enthusiastic, talented and professional research board members from both the public and private sectors to facilitate the governance of the Foundation in the context of medical research with the objective of being at the forefront in the development of a cure for CASK.

8.

08/23/2026

Promising Results. Real Progress. Help Us Take the Next Step!

Phase 1 delivered promising results. Now we need your help to keep the research moving.

UC Davis researchers have shown that reactivating the healthy copy of the CASK gene in human brain cells is possible.

Phase 2 is now underway. Cure CASK USA has already funded the establishment of the CASK mouse colony, which is progressing well with around 120 new pups.

Researchers are now beginning developmental and behavioural assessments to create reliable measures that can later be used to test potential therapies.

We are raising funds for the next stage — studying behaviour, brain activity, seizures and sleep, and linking these findings with results from human brain cells.
Target: $105,000
Raised: $60,000
Still needed: $45,000

This research has only been possible because families, supporters and donors have stood behind it.

Please help us raise the remaining $45,000 and keep this important work moving forward.

Every donation has a purpose. Every contribution moves the research closer to future treatments.

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08/13/2026

💜🇺🇸 BIG NEWS FOR OUR U.S. CASK COMMUNITY! 🇺🇸💜

We are excited to share an important update for CASK families across the United States.

The Social Security Administration has officially added CASK-Related Gene Disorders to its Compassionate Allowances (CAL) list!

This is an important step forward in recognizing the very real and complex challenges faced by individuals living with CASK-related disorders and their families. 💜

What does this actually mean?

The Compassionate Allowances program allows Social Security to identify and expedite disability claims involving certain serious medical conditions.

👉 Being on the Compassionate Allowances list does NOT automatically guarantee that someone will receive disability benefits. Families still need to apply and meet Social Security’s eligibility requirements.

What it can mean is that a claim involving a CASK-related gene disorder may be identified and processed more quickly — potentially reducing the amount of time families spend waiting for a disability determination.

According to Social Security, the Compassionate Allowances list now includes 314 conditions, and more than 1.2 million people have been approved through this accelerated process since the program began.

For those of us in the CASK community, this recognition MATTERS. 💜

We know how much time CASK families spend advocating for our children and loved ones — explaining an incredibly rare disorder, gathering medical records, navigating services and fighting for the support they deserve.

Having CASK-Related Gene Disorders specifically recognized by the Social Security Administration is another meaningful step forward.

📣 PLEASE SHARE THIS with CASK families across the United States, especially anyone who may be considering applying for Social Security disability benefits.

Rare doesn’t mean invisible.

Our voices matter.�And CASK is being recognized. 💜

🔗 Read the official Social Security Administration announcement here:
https://www.ssa.gov/news/en/press/releases/2026-08-11.html

08/09/2026

*CASK GENE REACTIVATION IS POSSIBLE*
The Next Step Towards Gene Therapy Starts Now.

Phase 1 delivered promising results. Now we need your help to complete the next steps.
Phase 1 of this important research has produced a significant and encouraging result: researchers in the Fink and Halmai laboratories at UC Davis have demonstrated that reactivating the healthy copy of the CASK gene in human brain cells is possible.

Now we are progressing to Phase 2

Cure CASK USA has already awarded $70,945 to support the establishment of the CASK mouse colony. Professor Jill Silverman’s team received the mice from JAX Laboratories and began building the colony in June 2025. Our mouse colony is progressing well!!!!

Our next fundraising target
We are now raising funds to study behaviour, brain activity, seizures and sleep in CASK mouse models, and to connect these findings with results from human brain cells.
By combining behavioural testing with EEG, researchers can better understand how CASK affects brain function and identify measurable outcomes that may help determine whether reactivating the healthy copy of CASK leads to meaningful improvement.
Fundraising target: $105,000
Raised so far: $60,000
Still needed: $45,000

We believe families and donors deserve to know exactly where their funds are going. Every donation received towards this campaign will directly support these identified research tasks and the next stage of this therapeutic program.
Please help us raise the remaining $45,000.

Together, we can move this research from promising laboratory findings towards better understanding, better measurement and, ultimately, the possibility of a future treatment for females living with CASK-related disorders.
Every step is clear. Every contribution has a purpose. Every donation moves the research forward.
www.curecask.com

08/06/2026

New research into X-chromosome inactivation is opening therapeutic possibilities for X-linked genetic disorders including CASK. For families like ours, this is more than exciting science. It is hope.
Cure CASK and the CASK Coalition helped fund Phase 1 of a groundbreaking reactivation gene therapy project at UC Davis. Now we are fundraising for Phase 2 to keep this vital research moving forward.

Please support us. Every contribution brings us closer to changing the future for girls with CASK.

Learn more: https://curecask.com/research/cure-cask/ or link in bio.

08/05/2026

Every now and then, a scientific publication reminds us why we never stop fighting.

This week, researchers highlighted how advances in understanding X-chromosome inactivation are creating new therapeutic opportunities for X-linked genetic disorders. For most people, that's exciting science. For families like ours, it's hope. https://www.news-medical.net/news/20260803/Advances-in-X-chromosome-inactivation-open-therapeutic-opportunities-for-X-linked-genetic-disorders.aspx

Hope that one day our children may have more than supportive care.
Hope that science can change the future.
Hope that the words "there is nothing we can do" will no longer define a diagnosis.

CASK is an X-linked genetic disorder, which is why this research is so significant. One of the most promising approaches being explored is reactivation gene therapy—a strategy aimed at reactivating the healthy copy of the CASK gene that has been naturally switched off on the inactive X chromosome.

This isn't just a concept we're watching from the sidelines.
Cure CASK, together with CASK Research UK and Association Enfants CASK France, funded the first phase of this groundbreaking reactivation gene therapy project, led by the outstanding team at UC Davis, California.

Because of our community and supporters, this research is already underway.
But science doesn't stop after the first milestone.

We're now fundraising to support Phase 2, and we need our community's help to keep this momentum going.

Please consider supporting our fundraising efforts. Every contribution, no matter the size, brings us closer to changing the course for our girls with CASK. To learn more about the Second Phase click here: https://curecask.com/research/cure-cask/ or link in bio

07/16/2026

CASK Gene Awareness Day is today 15 July!

Today, we honour and celebrate our beautiful CASK heroes , each of the individuals living with CASK, and the families who love, care for and advocate for them every day.

We also pause to honour and remember the precious CASK children who have sadly passed away. Their lives, their stories, and the love they brought into the world will never be forgotten.

Each child’s journey is different. Some face seizures, feeding challenges, movement difficulties, vision or hearing issues, developmental delays, communication challenges, and complex medical needs. Many families spend years searching for answers, navigating appointments, therapies, hospital stays and uncertainty.
But behind every diagnosis is a life of immense value, courage and love.

Our CASK heroes remind us why awareness matters. Awareness helps families feel seen. It helps clinicians recognise this ultra-rare condition. It helps drive research. And it helps build hope for better treatments and a better future.

Today, we celebrate every journey and every life. We stand with every CASK family around the world.

Changing lives through science and hope.

07/12/2026

CASK Gene Awareness Day is on 15 July.

In the lead-up, we will be sharing facts about CASK to help raise awareness of this ultra-rare disease and the children and families affected by it.

Fact 4: The main 2 disorders are Microcephaly with pontine and cerebellar hypoplasia and X-linked intellectual disability

By sharing, learning and speaking about CASK, we can help increase understanding, support earlier diagnosis, and bring greater visibility to our CASK heroes.

07/09/2026

CASK Gene Awareness Day is on 15 July.

In the lead-up, we will be sharing facts about CASK to help raise awareness of this ultra-rare disease and the children and families affected by it.

Fact 3: When a change occurs in the DNA sequence of the CASK gene, the instructions for making the CASK protein may be altered. This can affect how the protein works, or prevent it from being made properly, potentially leading to a neurodevelopmental disorders.

By sharing, learning and speaking about CASK, we can help increase understanding, support earlier diagnosis, and bring greater visibility to our CASK heroes.

07/08/2026

CASK Gene Awareness Day is on 15 July.
In the lead-up, we will be sharing facts about CASK to help raise awareness of this ultra-rare disease and the children and families affected by it.
Fact 2: A CASK gene mutation refers to a change or alteration in the DNA sequence of the CASK gene. DNA is the body's genetic instruction manual made up of a series of chemical letters that tell our cells how to grow, develop and function.
By sharing, learning and speaking about CASK, we can help increase understanding, support earlier diagnosis, and bring greater visibility to our CASK heroes.

Address

1401 21st Street STE 6119
Sacramento, CA
95811

Website

http://www.curecask.com/

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