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Support the Argonaute Syndromes Conference 2025

Uniting Hope and Research: Support the Argonaute Syndromes Conference 2025

Note: RARE Village is AGO Alliance's US 501(c)3 partner for this charity fundraiser. It will ultimately benefit AGO Alliance.

AGO Alliance, a dedicated volunteer- and parent-led non-profit organization, is driven by the mission of improving the lives of children and families affected by rare Argonaute syndromes. We are reaching out to you today with a vital opportunity to contribute directly to progress in understanding and treating these complex conditions by supporting the upcoming 3rd International Argonaute Syndromes Family Conference.

Argonaute syndromes arise from variations in the AGO1, AGO2, or AGO3 genes and can present significant challenges for affected children, often including developmental delays, speech impairment, hypotonia (a 'floppy' body), and seizures. These are incredibly rare conditions, known to affect around 150 children worldwide, with likely many more remaining undiagnosed. There are no specialized treatments. For families navigating the complexities of these syndromes, the isolation can be profound. Finding accurate information, empathetic support, and a sense of community with others who understand their journey is not just helpful—it's essential.

The 3rd International Argonaute Syndromes Conference, scheduled to take place in the city of Prague, Czech Republic, from August 29th to 30th, 2025, represents a beacon of hope and a crucial step forward. This significant event will bring together patient families, leading international Argonaute researchers, and dedicated clinicians. Our primary goal is to accelerate the understanding and treatment of rare AGO1-, AGO2-, and AGO3-related syndromes and to empower affected families with the knowledge and support they need to provide the best possible care for their children.

This conference is thoughtfully organised as a satellite event of the 3rd scientific meeting, "The Argonautes," generously hosted by Prof. Svoboda.

This unique structure provides an invaluable platform for families and researchers to:

Gain access to the latest research findings, including crucial updates from the Natural History Study.
Connect with other families who share similar experiences, fostering a vital support network and reducing the feeling of isolation. As Iben, mother of Jacob with AGO1, shared at the 2024 conference, attending helps "see what wonderful kids and families are out there" and combats the feeling of being "alone in everyday life" due to the rarity of the disease. Aldona, mother of Albert with AGO1, echoed this sentiment, stating that after the diagnosis, they "felt very alone," but "AGO Alliance and the science community gave us hope" and that the conference represents "hope to understand the disease, come up with a treatment long-term, and have the support of like-minded people".
Get direct insights into the real-life challenges faced by individuals living with Argonaute syndromes. Nora, the president of AGO Alliance, highlighted the importance of this bridge, stating, "For us as a patient group it is vital to know that there are researchers out there, who are dedicated, and who are making progress to help our children, to find a treatment and a cure. And the scientists can see who their work is helping and why we really need them to make progress".
Encourage the generation of new research ideas and foster crucial collaborations between families and the scientific community. As Nobel Laureate Victor Ambros noted after attending the 2024 conference, "What was especially remarkable about this meeting... was that I learned so much from meeting the families and the patients". He further reflected on the unexpected learning about "courage, generosity, unconditional love, and joy of life" from the families. He also found it remarkable that "the mutations, the variants themselves, are proving to be incredibly informative about the basic biology of the gene regulatory mechanisms that Argonautes conduct inside cells.

To maximise the impact of this crucial gathering, we urgently need your support. Your compassionate donations will directly enable us to:

Provide much-needed family travel scholarships, making it possible for more families from around the world to attend the conference in Prague. For many families facing significant medical and financial burdens, the cost of international travel is prohibitive. Your contribution can remove this obstacle and allow them to access vital information and support.
Provide a platform for sharing patient stories, such as through poster sessions held jointly with scientists
Cover essential logistical costs associated with hosting an international conference, ensuring a smooth and productive experience for all attendees.

By contributing to this fundraiser, you will become an integral part of a community striving to improve the lives of children like Albert and Jacob, whose families have shared their experiences. You will be fostering vital collaborations between parents who live with these conditions every day and the brilliant scientific minds dedicated to finding answers. As Professor Julie Claycomb from the University of Toronto stated, "As a researcher, it makes such a huge impact on thinking about our research and really seeing the people who we could help with this research. And it just makes us all want to work faster and harder to get answers for these families".

We invite you to witness the impact of these gatherings by watching the 4-minute recap of the 2024 edition, which includes insights from the 2024 Nobel Prize winner Victor Ambros. His participation underscores the growing scientific interest and the profound connection researchers are forming with the Argonaute syndrome community.

Please make a donation today and become a vital part of this important journey. Every contribution, regardless of size, will bring us closer to funding this life-changing 3rd edition of the Argonaute Syndromes Conference.

Donations made through GoFundMe are tax-deductible in the US or Switzerland. If you need a receipt for Switzerland, please contact AGO Alliance with your information.

Sincerely,

AGO Alliance

We are committed to keeping you informed about our progress and will share updates on this page to demonstrate the tangible impact of your generosity. We also encourage you to share our story with your networks to help us reach more individuals who may be moved to support our cause. Together, we can make a real difference in the lives of families affected by Argonaute syndromes.