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In the Know – April 2019

VOLUME 14, ISSUE 4

 

RESEARCH NEWS

Wave Life Sciences Precision-HD Update

Wave Life Sciences provided an update on the timing of the release of the topline data from their ongoing PRECISION-HD program.  In their letter, Wave noted that they will be in a position to release trial topline results by the end of 2019.

RG6042 Huntingtin-Lowering Trial Information 

Roche Pharmaceuticals sent a letter to the global HD community to provide an update on the design of the GENERATION HD1 study.

An Updated Trial Design for Roche’s Huntingtin Lowering Trial

In late March, we received word about a change to the design of Roche’s ongoing huntingtin lowering trial – known as the GENERATION HD1 study. The update in the trial design is a surprise, but we believe it’s a good thing. What exactly happened?

FDA Places Gene Therapy AMT-130 on Fast Track to Speed Development

The U.S. Food and Drug Administration (FDA) has given fast track designation to AMT-130, uniQure’s gene therapy candidate for the treatment of Huntington disease.

COMMUNITY NEWS

Bringing Awareness to Huntington Disease (CTV Northern Ontario, April 9, 2019)

Members of the Huntington Society of Canada were at a Sudbury library Monday night explaining the devastating effects of the progressive brain disorder, Huntington’s disease.

Thunder Bay residents learn about what it’s like to live with Huntington’s Disease (CBC, April 10,2019)

“Hurry Up and Wait: Thinking About Thinking with Huntington’s Disease” A special presentation in Thunder Bay aims to help families and friends understand the cognitive challenges of the disease and how to communicate with their friends and families who have the genetic condition.

FAMILY PLANNING AND HD

Family Planning Options for the HD Community (S&K, Volume 12, Issue 2)

The decision to start a family can be challenging if you are affected by Huntington disease (HD) or at-risk of HD.   Procedures involved and costs associated with each parenting option will vary across provinces, so any reference to costs or process should be verified by the local expert in your area.

The Cost of Not Knowing a Huntington’s Diagnosis (The Atlantic, March 19, 2019)

Some would-be parents who might have inherited the fatal gene want their doctors to keep secrets—even from them.

HSC NEWS

Paul Klodniski Moving On

Since March 1991, Paul Klodniski has been the Resource Centre Director for the Huntington Society of Canada (HSC) Eastern Ontario Resource Centre. Paul has made the decision to move on and pursue other endeavors later this year.

Clinical Trials: A Time for Hope

Video recording from Dr. Mark Guttman’s presentation at the Changing Landscape of HD event in Toronto.

COMMUNITY EDUCATION FORUMS

The Huntington Society of Canada invites you to attend its biennial Community Education Forum for presentations on research and caregiving.

Every other year, HSC provides a live forum wherein patients and carers can meet to learn about the most recent updates in HD, network with other patients and perhaps most importantly, have the opportunity to have their questions answered by leading professionals who specialize in HD.

For more information and to register, please click here.


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