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

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.

Rareconnect closing down

Rareconnect will retire on 1st December 2023 and we won't be able to post on the DRPLA community anymore. You can continue getting updates on the following sites:DRPLA Facebook group - https://www.facebook.com/groups/144167217964CureDRPLA Facebook page...

New interview alert!

Junko Shiozawa, Advisory Board Member, visited Europe and met with Julie Greenfield, Head of Research at Ataxia UK, to talk about ataxia research and the latest news in DRPLA.

Are your healthcare professionals knowledgeable about DRPLA?

From your experiences when dealing with healthcare professionals: What information would be helpful to have out there?Are your healthcare providers familiar with CureDRPLA?Would it be helpful to have a flyer about DRPLA in lay language?What information would be...

Share our new CureDRPLA pamphlet to raise awareness of DRPLA

You can find it here. Send it to friends, family, caregivers and medical professionals!

News

Insights from the International Drug Repurposing conference

Insights from the International Drug Repurposing conference

Mar 28, 2024

On March 6-7, 2024, the International Drug Repurposing conference took place in Barcelona, bringing together nearly 200 attendees. Among them was Dr. Silvia Prades, our Research Manager, representing our commitment to advancing research. Drug repurposing consists of...

read more

Social

Cure DRPLA

1 week ago

Cure DRPLA
From May 29 to June 1, a neurology conference took place in Tokyo (AOCN 2024). Junko and six other volunteers whose children and spouses have DRPLA, prepared a conference booth and took turns presenting. The booth was a meeting point used to display pamphlets from CureDRPLA and engage with 60+ health professionals, many of whom follow people with DRPLA. One of the volunteers said: “I am grateful to have been able to attend this conference and to have been given this really valuable opportunity. I was able to meet and talk with fellow mothers, and I was reminded that we all feel the same way. […] I hope that clinical trials will start in Japan as soon as possible.” ... See MoreSee Less

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Cure DRPLA

2 weeks ago

Cure DRPLA
Highlights from the first half of 2024:1) An n-of-1 clinical trial started in the US and we found out that at least one other family has applied to be considered for treatment2) The CureDRPLA Global Patient Registry now includes information on 49 individuals with DRPLA from 10 different countries3) We published two articles in scientific journals, keeping the community informed of our work4) Attended a conference in Barcelona focused on drug repurposing5) The DRPLA Natural History and Biomarkers Study has enrolled 34 people with DRPLA and 20 people without DRPLA6) 87 people have subscribed to the CureDRPLA newsletter ... See MoreSee Less
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Cure DRPLA

3 weeks ago

Cure DRPLA
Have you subscribed to the CureDRPLA newsletter?📨 The next issue is out next week! The newsletter is another way to stay connected with us and informed about our progress.🔍 Send communications every 6-8 weeks.📣 Stay up-to-date with news important to the DRPLA community.🔬 Find out more about the research projects we are funding.Sign up now and and review previous issues curedrpla.org/en/newsletter-archive/ #curedrpla #drpla #drplaresearch ... See MoreSee Less
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Cure DRPLA

4 weeks ago

Cure DRPLA
Our recent study dives deep into understanding DRPLA symptoms and their impact on daily life through interviews with people with DRPLA and caregivers. Here are some key takeaways:💬 Personal stories emphasize the importance of incorporating their experiences in clinical trial designs🎯 People with DRPLA and caregivers shared their priorities for treatment improvements, such as reducing ataxia and increasing independence🛣️ Despite willingness to join clinical trials, travel remains a significant barrierRead the full article to explore all the findings: bit.ly/qualitative-interviews Thank you to all participants for your invaluable contributions. Your stories are paving the way for better DRPLA treatments. ... 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.