cure drpla

CureDRPLA Global Patient Registry is available!

Click here for global patient registry

What is DRPLA?

Dentatorubral-pallidoluysian atrophy, commonly known as DRPLA, is a progressive brain disorder that affects coordination, balance, speech, and causes involuntary movements, emotional problems, and a decline in thinking ability. The average age of onset of DRPLA is 30 years, but this condition can appear anytime from infancy to adulthood. The symptoms and progression vary depending on the age of onset.

What is CureDRPLA?

CureDRPLA is a US based non-profit founded by Paul and Andrea Compton. Paul and Andrea have a son that was diagnosed with DRPLA in August 2018. The mission of CureDRPLA is to connect families, physicians and scientific investigators to further DRPLA research and work towards a treatment for DRPLA. This webpage was created to find others that have this condition and are interested in finding a cure.

CureDRPLA
Global
Patient
Registry

The CureDRPLA Global Patient Registry is a worldwide registry of DRPLA patients.

This registry gathers the demographic and clinical information on DRPLA patients from across the globe.  By collecting information on all DRPLA patients, the CureDRPLA Global Patient Registry will be a powerful resource for research and will enhance opportunities for treatment development.

Patient Registry

Patient & Caregiver

Click below to find out what CureDRPLA has done and what we are currently doing to find to a treatment for DRPLA.  You will also find online resources and support organizations for DRPLA as well as YouTube channels specifically focused on DRPLA.

Patient & Caregiver

Click below to find out what CureDRPLA has done and what we are currently doing to find a treatment for DRPLA.  You will also find online resources and support organizations for DRPLA as well as YouTube channels specifically focused on DRPLA.

Patient & Caregiver

Patient &
Caregiver

Researcher
& Industry

CureDRPLA is investing in a number of projects in hopes of rapidly developing novel therapeutics for DRPLA.  Information on funding opportunities, a list of our preclinical projects as well as other efforts can be found here.

Research & Industry

Latest

Watch the recording of the 2025 DRPLA Research Update

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.

25th September is International Ataxia Awareness Day (IAAD)

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...

Prof Darren Monckton joins CureDRPLA as Scientific Consultant

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...

5 years of CureDRPLA

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...

Join us at ICAR – November 12-15

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.

DRPLA n-of-1 clinical trial

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.

Watch our 2023 DRPLA research update

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

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

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...

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

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...

Sign up for CureDRPLA newsletter

Be among the first to know and become part of our community. Sign up here.

News

In which countries can we find people with DRPLA?

In which countries can we find people with DRPLA?

Mar 22, 2023

If you ever asked yourself this, the map we have created will come in handy. We coloured in orange those countries in which at least one person with DRPLA has been identified – 35 countries in total! We have gathered this information from scientific articles and...

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Successful meet up in Cardiff with DRPLA families

Successful meet up in Cardiff with DRPLA families

Mar 8, 2023

On February 22nd, I organised a meet up for families affected by DRPLA who are based in Wales. I travelled to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at University College London on the DRPLA Natural History and Biomarkers Study. We met with...

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Social

Cure DRPLA

7 days ago

Cure DRPLA
Today, February 28, is Rare Disease Day. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions. With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities. Share this post on your social media to raise awareness about rare diseases. ... See MoreSee Less

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Cure DRPLA

3 weeks ago

Cure DRPLA
The Ataxia UK Helpline services are available for people with DRPLA living in the UK The Helpline is a resource and support hub for people who are affected by ataxias, including DRPLA. As well as providing support and information around diagnosis, treatment and living with ataxia, there is a range of other issues they can help with, including: benefits, housing, finances, care needs, health needs, mental health, end of life care, aid and adaptations, transport and travel, employment, education and accessing grants. If you would like to find out more about the Helpline, or talk to a member of the team, please get in touch by calling 0800 995 6037 or by emailing help@ataxia.org.uk.curedrpla.org/en/2026/02/09/the-ataxia-uk-helpline-services-are-available-for-people-with-drpla/ For those outside the UK: If you do not live in the UK and would like support in these areas, please contact CureDRPLA at info@curedrpla.org. We might be able to signpost you to other organizations or resources that are tailored to your country and needs. ... See MoreSee Less
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Cure DRPLA

1 month ago

Cure DRPLA
CureDRPLA awards DRPLA Centers of Excellence accreditations to those neurologists who have experience in DRPLA care and commit to supporting our work. In addition to providing expert clinical care and identifying the various needs of those diagnosed with DRPLA, this initiative also aims to help families more easily identify clinical experts in DRPLA for their healthcare needs.Once a center has been accredited, we reach out each year to gather an update on how their clinic is progressing and whether the accreditation has had an impact. It was encouraging to see that our accreditations may already be making a difference:• Eight more people with DRPLA were diagnosed over the last year by Dr Gan at The First Affiliated Hospital in China. • Two additional families with DRPLA visited Dr Jee-Young Lee’s and Dr Ryul Kim’s clinic at the SMG-SNU Boramae Medical Center in South Korea. They are also seeing an increase in contacts from physicians at other hospitals who want to refer people with DRPLA to this center. ... See MoreSee Less
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join drpla

Join Our DRPLA Community Today

At CureDRPLA, we connect patients, families, clinicians and researchers to further DRPLA research and work towards a treatment for DRPLA. You can join our community by going to Rare Connect. For more information about our community, get in touch with us.