1 Year Anniversary of SCAsource!

SCAsource launched one year ago today on September 27, 2018. In that time we’ve had over 18,000 views and published over 40 articles. Now we are launching a survey about the website to make sure we are meeting our goals.

SCAsource is turning a year old! A huge thank you to all our volunteer writers, editors, and proofreaders who help make the content that gets posted every week. We couldn’t do this without them. Also a big thank you to all who read and share SCAsource content. You all are the reason we made SCAsource in the first place.

Here at SCAsource, we are so excited with how we have grown in these first twelve months, and can’t wait to see where we go from here. To get a better idea of if we are meeting our goals and how we can improve, we are launching a survey about SCAsource.

SCAsource reader survey logo, which is a clipboard that has a box with the checkmark in it
Introducing the SCAsource reader survey!

What is the SCAsource Reader Survey?

This study will look at the impact of SCAsource on its readers and their knowledge of research being conducted on spinocerebellar ataxias. For this study, you are invited to complete a brief online survey that will take about 20 minutes to complete.

Why are you doing a survey?

We want to check if SCAsource is achieving its goal of making ataxia research more accessible and understandable to readers. We will use this survey data to help improve future SCAsource content. Also, we hope by studying SCAsource, that we can provide a framework that other rare disease groups can use to launch their own websites.

Additionally, we want to use this data to show the impact SCAsource to potential sponsors and funders. We want to secure funding to cover the costs of keeping the SCAsource website online.

Are there any risks? Can I withdraw part of the way through the survey?

The risks involved in participating in this study are minimal. You do not need to answer questions that make you uncomfortable. If you decide to be part of the study, you can stop (withdraw) from the study at any point before submitting your survey responses. Once you have submitted your responses for this anonymous survey, your answers will be put into a database and will not be identifiable to you. This means that once you have submitted your survey, your responses cannot be withdrawn from the study because we will not be able to identify which responses are yours.

Where can I get more information about the SCAsource Reader Survey?

You can read the Study Letter of Information, which gives you the full details about the survey. This study has been reviewed and cleared by the Hamilton Integrated Research Ethics Board (HiREB).  If you have any concerns or questions about your rights as a participant or about the way the study is being conducted, call the Office of the Chair, HiREB, at 905.521.2100 x 42013.

Where can I fill out the survey?

Thank you in advance for your time and consideration with the SCAsource Reader Survey! You can access the survey online at this link. With your feedback, we look forward to making SCAsource even better!

International Ataxia Awareness Day 2019

Today marks International Ataxia Awareness Day (IAAD), which is celebrated every year on September 25th. IAAD brings people together from around the world to raise awareness about this group of rare diseases and to raise money for continuing research efforts. For more information on how you can participate in IAAD this year, take a look at the National Ataxia Foundation’s event page.

group of people, including some wheelchair users, stand in a circle holding their hands up. They are happy. Overtop is the IAAD2019 logo and website. www.ataxia.org
Image courtesy of the NAF.

Here at SCAsource, we are celebrating IAAD 2019 by highlighting our top ten most-read articles from this year. We hope you enjoy reading these throwbacks!

10. Decreasing ATXN3 levels can alleviate some symptoms in an SCA3 mouse model

Antisense oligonucleotides: a potential treatment for SCA3 that partially rescues SCA3 disease mouse models.

9. The Discovery of SCA8

How one team uncovered the first SCA known to be caused by a CTG repeat expansion mutation.

8. Approaching the age of clinical therapy for spinocerebellar ataxia type 1

New research (published Nov. 2018) reveals promising potential genetic therapy for SCA1.

7. Protein kinase C to the Rescue in Spinocerebellar Ataxias

Protein kinase C: one protein that may help to protect against cerebellar neuronal dysfunction & death in spinocerebellar ataxias.

6. Early Cerebellum Development Abnormality in Adult-Onset Spinocerebellar Ataxia Type 1

Researchers for the first time identified that spinocerebellar ataxia type 1 (SCA1) may have roots in early cerebellar circuit malfunction.

5. Snapshot: What are Clinical Trials?

Ever wonder what clinical trial “phases” mean? Why do trials need so many phases? How does this help test how safe a new treatment is? Here’s a quick overview of how drugs get from an idea in a research lab to market.

4. Dynamic duo strikes again – Orr and Zoghbi discover the primary driver of SCA1 pathology in the cerebellum

Research group uncovers the key molecular interaction that causes spinocerebellar ataxia type 1 (SCA1).

3. ASOs clear toxic protein from cells, reducing ataxia in SCA2 mice

Scientists uncover a promising therapeutic avenue to treat spinocerebellar ataxia type 2 (SCA2).

2. A novel therapeutic approach for the treatment of SCA3 

Researchers in the Netherlands uncover a new way to treat SCA3.

And last, but certainly not least:

1. Accidental discovery reveals possible link between cerebellar function and motivation

Stanford researchers accidentally discover a new role (reward prediction) for the cerebellum, the primary brain region affected by spinocerebellar ataxias.

logo of IAAD2019: a globe with multiple people from around the world marked on it

SCAsource Turns 6 Months Old!

Today marks the six-month anniversary of the SCAsource website launch. A big thank you to all who have read our posts and have come back for more! It is really exciting to see SCAsource grow from an idea shared between colleagues to an actual website that people read.

chocolate cupcake with "Happy Anniversary" topper in front to sign which says "Happy Six Month Anniversary SCAsource!"
Celebratory cupcake purchased to mark the six month anniversary of the SCAsource website. It was very delicious.

Another thank you to all our volunteers who help to write, edit, and proofread content for the site. SCAsource wouldn’t be possible without your help.

We are looking forward to seeing how SCAsource continues to grow over the next few months and years. Today though, we are excited to celebrate what we have done and are happy to announce a brand-new type of article we will be testing out.

Over the past few months, we’ve had some messages from readers asking us specific questions such as: What is DNA? What are clinical trials? What are Purkinje cells? Inspired by these questions, we are excited to announce SCAsource Snapshots.

SCAsource Snapshot logo with a camera "snapping" a picture
The new logo of SCAsource Snapshots

Snapshots are short entries on a single scientific concept or topic. They’ll explain what a topic is and how it ties into ataxia research. We have 12 topics lined up based on your suggestions to try out this new style. Snapshots will be uploaded every other week starting next Friday, April 5. Please let us know what you think!

Welcome to SCAsource!

About six months ago, scientists from all over the world converged on the 2018 Ataxia Investigators Meeting. Colleagues and students discussed the latest advancements in ataxia research. Researchers were able to connect with patients and families, letting them know what progress was being made.

Some of the discussion between trainees at this meeting highlighted how great it was to be able to speak with patients and let them know what was happening in the lab. It was unfortunate that this opportunity only happened every two years.

It was at this meeting where the idea for SCAsource was born: a website where scientific articles on SCAs and related ataxias would be translated into plain language that anyone would be able to understand.

Road stretching out into the distance
The journey begins. Photo by Nextvoyage on Pexels.com

Continue reading “Welcome to SCAsource!”