Announcements Archives - CureDRPLA

Upcoming webinars on DRPLA with the National Ataxia Foundation

Silvia Prades — Wed, 15 Apr 2026 13:20:32 +0000

We are co-hosting a couple of webinars on DRPLA with the National Ataxia Foundation (NAF) to reach as many people as possible. We encourage anyone with DRPLA, family members, caregivers and friends to join to learn more.

The “All About DRPLA” webinar is taking place on May 8 at 1pm CDT / 7pm BST. This session will be presented by Dr Yael Shiloh-Malawsky, Professor of Neurology at the University of North Carolina at Chapel Hill.

You can register for this session here: https://www.ataxia.org/event/all-about-drpla/

The “Research and Treatment Development for DRPLA” webinar is taking place on May 21 at 10am CDT / 4pm BST. This session will be presented by Dr Silvia Prades, Research and Business Operations Manager for the DRPLA Research Programme at CureDRPLA and Ataxia UK.

You can register for this session here: https://www.ataxia.org/event/research-and-treatment-development-for-drpla/

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Watch the recording of the 2025 DRPLA Research Update

Silvia Prades — Thu, 22 Jan 2026 15:46:44 +0000

We recorded our annual update so you can watch it at your own pace. It includes updates on our organization, N-of-1 trials, DRPLA Natural History and Biomarkers Study, Patient Registry and other relevant news and projects.

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25th September is International Ataxia Awareness Day (IAAD)

Silvia Prades — Fri, 19 Sep 2025 11:51:36 +0000

This year we are raising awareness about DRPLA. Let’s come together to share our 5-Year Progress Report, which includes:
✔️ A comprehensive summary of DRPLA
✔️ Highlights of research projects funded by CureDRPLA
✔️ Updates on efforts to advance treatments for DRPLA
Together, we can make a difference.

Download the 5-Year Impact Report here.

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Prof Darren Monckton joins CureDRPLA as Scientific Consultant

Silvia Prades — Wed, 30 Jul 2025 09:21:20 +0000

Darren Monckton is a Professor of Human Genetics at the University of Glasgow and he will be advising CureDRPLA on scientific matters. Prof Monckton brings years of experience in research for conditions like Huntington’s disease and Myotonic Dystrophy. His expertise is on repeat expansion disorders like DRPLA, in which some parts of the DNA are unusually long and unstable, which can worsen over time and generations. His research group is working to understand why this happens by studying human samples, lab models and computer simulations. He is also developing advanced genetic tools to detect these changes more accurately.

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5 years of CureDRPLA

Silvia Prades — Fri, 01 Nov 2024 00:00:00 +0000

CureDRPLA was incorporated as a non-profit foundation in November 2019 by Paul and Andrea Compton. We are honoring 5 years of CureDRPLA with this impact report. In this report you will find a summary of our achievements to date and our goals for the next 5 years.

While we have come a long way in 5 years, we have not done it alone. That is why we invited scientists, clinicians, individuals with DRPLA, and their caregivers to share their stories and testimonials. We wanted to hear directly from them how these five years have made a difference in their lives.

Take a moment to explore their insights and see how far we have come together!

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Join us at ICAR – November 12-15

Silvia Prades — Tue, 28 May 2024 09:49:15 +0000

ICAR, largest gathering of ataxia scientists and medical professionals, will take place in London, November 12-15. CureDRPLA team members will be there, along with scientists working on DRPLA who will present their latest research.

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DRPLA n-of-1 clinical trial

Silvia Prades — Mon, 12 Feb 2024 11:30:00 +0000

Take a few minutes to read this announcement about an upcoming n-of-1 clinical trial for an individual with DRPLA based in the US.

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Watch our 2023 DRPLA research update

Silvia Prades — Tue, 19 Dec 2023 12:54:00 +0000

Every year, we like to provide an update on our projects, offering you insight into what we are working on and what is on the horizon. Do not miss out! https://youtu.be/9R5UcB26_FU

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Register for DRPLA Research Talk and Q&A, Nov 14

Silvia Prades — Wed, 01 Nov 2023 15:50:08 +0000

Event tailored for individuals with DRPLA, their families and anyone interested in DRPLA. Make sure to register in advance (it’s free!).

Our Research Manager, Dr Silvia Prades, will be providing a comprehensive update on the projects funded by CureDRPLA. Followed by a Q&A with DRPLA experts: Dr. Yael Shiloh-Malawsky (University of North Carolina) and Dr. Hector Garcia-Moreno (University College London). Both play key roles in our natural history study.

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The 2023 CureDRPLA Research Conference is taking place in Boston on October 10-11

Silvia Prades — Thu, 05 Oct 2023 08:32:57 +0000

We hosted the first-ever CureDRPLA Research Conference in May 2022, with participation from scientists, neurologists, and representatives from pharmaceutical and biotech companies. It was such a huge success that we decided to make it a yearly event and the time has come.

The 2023 CureDRPLA Research Conference is taking place in Boston on October 10-11. This year’s gathering will feature a select group of speakers who will share insights on various DRPLA projects, ensuring that everyone is up to date with the latest developments.

The valuable feedback we receive during this conference will play a pivotal role in refining our strategy and streamlining our most ambitious projects. While this meeting is primarily tailored for the scientific community, rest assured that we will promptly share updates with our broader community upon our return from Boston!

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