How Your Support Helps Build Momentum Towards Treatments and Cures

How Your Support Helps Kids like Amarli

For families living with a rare GRI disorder, research represents something incredibly powerful: hope.

Hope for a greater understanding of these complex conditions.Hope for better treatments.And ultimately, hope for a cure.

The CureGRIN Foundation is working to turn that hope into progress by bringing families, scientists, clinicians, pharmaceutical companies and advocates together.

Here are five important ways CureGRIN is helping move research forward.

🔬 Funding patient-centred research

CureGRIN helps scientists prioritise and fund research that reflects the needs of families living with GRI disorders.

Information collected through the global GRI Census helps researchers better understand how different genetic variants affect the body and contribute to symptoms.

This work also supports the testing of potential treatments in cell and animal models—an essential step before any treatment can progress towards human clinical trials.

🧪 Building industry partnerships

Scientific discoveries do not become treatments without strong partnerships.

CureGRIN works with pharmaceutical companies to help bridge the gap between laboratory research and real-world medicine.

Support also helps fund the development and sharing of the “How to Treat and Cure GRI Disorders” guide, along with important meetings between researchers and industry leaders to explore new treatment opportunities.

📊 Preparing for future clinical trials

Before a clinical trial can begin, researchers need reliable information, biological samples and agreed ways of measuring whether a treatment is working.

CureGRIN is helping make the global GRI community trial-ready through:

• Biosample collection

• Coordinated patient data

• Tracking symptoms over time

• Identifying treatment priorities

• Developing biomarkers and clinical outcome measures

This preparation is critical. It means that when promising treatments become available, the GRI community will be better positioned to move forward.

📣 Advocating for families worldwide

CureGRIN also brings the voices of families directly to governments, regulators and funding agencies.

Current advocacy includes pushing for individual diagnostic ICD codes for GRI disorders and engaging directly with organisations such as the United States Food and Drug Administration.

Greater recognition can help improve diagnosis, data collection, research funding and future access to treatments.

🌐 Connecting families, researchers and clinicians

No family should have to navigate a rare diagnosis alone.

CureGRIN supports opportunities for families and experts to connect through regional meetups, physician information packs, research roundtables and GRICON.

These connections help families access reliable information while giving researchers and clinicians a better understanding of the people at the centre of their work.

Why Amarli Army is supporting CureGRIN

For Amarli and other children living with GRI disorders, every research project, biosample, meeting and new partnership represents another step forward.

There are no promises or quick solutions when it comes to rare-disease research.

But there is real progress and real reason for hope.

That is why funds raised through Trek for Amarli 2026 will support the work of the CureGRIN Foundation.

Because every step taken by our community can help move researchers one step closer to treatments and, one day, a cure.

Every step matters. Together, we are walking towards a cure.

👉 Register free for Trek for Amarli 2026: https://www.eventbookings.com/b/event/trek-for-amarli-2026