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

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.

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...

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...

read more
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...

read more
Interview about the DRPLA Natural History and Biomarkers Study

Interview about the DRPLA Natural History and Biomarkers Study

Feb 1, 2023

We interviewed Dr Hector Garcia-Moreno and Ola Volhin about the DRPLA Natural History and Biomarkers Study, watch the full interview here. This is a global study with sites in London, New York and North Carolina, all of which are currently recruiting participants. The...

read more

Social

Cure DRPLA

1 week ago

Cure DRPLA
Watch the recording of the 2024 DRPLA Research Update TalkDid you miss our meeting on December 4? Don’t worry—we have got you covered! Dr Silvia Prades recorded her presentation to allow more people to learn about our work and updates. This talk included updates on our organization, the DRPLA Natural History and Biomarkers Study, the Patient Registry and the highly anticipated updates on the N-of-1 clinical trials.We would like to extend our gratitude to everyone who joined the meeting—it was wonderful to connect with so many of you. We are also incredibly thankful to Dr Yael Shiloh-Malawsky and Dr Hector Garcia-Moreno for attending and taking the time to answer all your questions. ... See MoreSee Less

2024 DRPLA Research Update

youtu.be

Our mission is to connect families, physicians and scientific investigators to further DRPLA research and work towards a treatment. In this video we provide ...

Video

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

Cure DRPLA

3 weeks ago

Cure DRPLA
One DAY left for DRPLA research update for non-scientists and Q&A with neurologists - December 4If you want to learn more about our work and the research we’re funding, this session is for you. Our Research Manager, Dr Silvia Prades, will provide an update on our current progress and outline our objectives for the coming years. Including a recap of the research presented at the CureDRPLA Research Conference and ICAR. Followed by a Q&A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, experts in DRPLA. This event is tailor-made for individuals with DRPLA, their families and caregivers. Don’t miss this opportunity to gain insights, ask questions, and connect with fellow individuals who share similar experiences. Free registration is required to receive the meeting link.Date: Wednesday, 4th DecemberTime: 9-10am PST / 12-1pm EST / 5-6pm GMTLocation: Online via Zoom.Registration is required to receive the meeting link us06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc ... See MoreSee Less
View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

Cure DRPLA

4 weeks ago

Cure DRPLA
One week left for DRPLA research update for non-scientists and Q&A with neurologists - December 4 If you want to learn more about our work and the research we’re funding, this session is for you. Our Research Manager, Dr Silvia Prades, will provide an update on our current progress and outline our objectives for the coming years. Including a recap of the research presented at the CureDRPLA Research Conference and ICAR. Followed by a Q&A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, experts in DRPLA. This event is tailor-made for individuals with DRPLA, their families and caregivers. Don’t miss this opportunity to gain insights, ask questions, and connect with fellow individuals who share similar experiences. Free registration is required to receive the meeting link. Date: Wednesday, 4th December Time: 9-10am PST / 12-1pm EST / 5-6pm GMT Location: Online via Zoom. Registration is required to receive the meeting link us06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc ... See MoreSee Less
View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

Cure DRPLA

4 weeks ago

Cure DRPLA
Save the date – December 4, DRPLA research update for non-scientists and Q&A with neurologistsIf you want to learn more about our work and the research we’re funding, this session is for you. Our Research Manager, Dr Silvia Prades, will provide an update on our current progress and outline our objectives for the coming years. Including a recap of the research presented at the CureDRPLA Research Conference and ICAR.Followed by a Q&A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, experts in DRPLA.This event is tailor-made for individuals with DRPLA, their families and caregivers. Don’t miss this opportunity to gain insights, ask questions, and connect with fellow individuals who share similar experiences. Free registration is required to receive the meeting link.Date: Wednesday, 4th DecemberTime: 9-10am PST / 12-1pm EST / 5-6pm GMTLocation: Online via Zoom.Registration is required to receive the meeting link us06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc#/registration ... See MoreSee Less
View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

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.