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In the Know – May 2019

VOLUME 14, ISSUE 5 – May 2019



Roche RG6042 Update

On May 6, 2019, the New England Journal of Medicine (NEJM) published the first manuscript describing a study concerning the lowering of huntingtin protein in disease patients.  The NEJM paper focuses on the results of the Phase I/IIa study sponsored by Ionis (and now led by Roche Pharmaceuticals)…

An Updated Trial Design for Roche’s First Huntingtin Lowering Trial

(HD Buzz: May 7, 2019)

Roche announces an update to the GENERATION HD1 trial after reviewing the ASO open label extension study…

Huntington’s Disease Drug Reduces Levels of Abnormal Protein in Patients

( May 7, 2019)

A new study reports promising results for a new HD drug that has been found to be safe and lowers the levels of the abnormal huntingtin protein, giving hope for future use in the clinic…

Finally Hope for Those with Huntington’s

( May 2019)

*audio required*

Robin McKie, the Observer’s science and environment editor, discusses an innovative drug that may soon offer ways to fight Huntington’s disease, while Mark Newnham describes being diagnosed with the inherited condition…


Carrying the Huntington Gene

(CBC News Morning North: May 13, 2019)

*audio required*

Huntington’s is a devastating neurological illness which ravishes your body and your mind. It’s hereditary and if it’s in your family, there’s a 50/50 chance you could have it. We heard from Patricia Delyea of Sudbury who’s lost several family members to the disease. We also heard from Sarah Gauthier, the Northern Ontario Resource Centre Director for the Sudbury chapter of the Huntington Society of Canada.

“Shedding Light” on Huntington Disease in Canada and Around the World

(HSC Website)

May is Huntington disease (HD) Awareness Month and volunteers are spreading the word, educating Canadians about the disease and how they can help the thousands of Canadian families affected by this devastating disease, through several movements…


Take a Walk Through the Wildflowers in Support of the Huntington Society

(Barrie Today: May 11, 2019)

This is a great opportunity to de-stress and learn more about the natural world…

Raising Hopes for Finding a Cure for HD

(Timmins Daily Press: May 5, 2019)

Families affected by Huntington disease not only have to struggle with the debilitating conditions of their loved ones, but occasionally face criticism for bringing children into the world who have a 50/50 chance of sharing that fate…

Durham Region Huntington Group Raises Flags and Funds in May

(The Port Perry Standard: May 2, 2019)

Like other Durham Region residents family members coping with this terrible disease want to share some hope and support so they belong to the Durham Region Chapter of the Huntington Society…

May is Huntington Disease Awareness Month

(Snapd Guelph: May 3, 2019)

James Walters is advocating in behalf of all those with Huntington Disease…

Turning Huntington’s Disease Awareness into Action

(Huntington’s Disease News: May 9, 2019)

May is Huntington’s Disease Awareness Month in many parts of the world. It’s an excellent opportunity for those of us in the Huntington’s disease (HD) community to reach people who wouldn’t typically encounter this disease and share some understanding about the condition…

Walk to Cure Huntington Disease Returns to Vernon

(Vernon Morning Star: May 8, 2019)

The Okanagan Chapter of the Huntington Society of Canada is hosting their 12th annual Walk/Run to End Huntington Disease…

Advocate pushes for more Huntington’s Awareness

(The Brandon Sun: May 5, 2019)

Watching the Huntington’s disease flag fly at Brandon City Hall is emotional for Barb Strutt. Two-thirds of her family has been affected by the genetic disease…

Chatham Family Bringing their Fight against Huntington’s Disease to City Hall

(Blackburn News: May 3, 2019)

Amanda Rivait’s family has a long history of battling Huntington’s Disease (HD), a genetic disorder that results in the death of brain cells…


My Daughter’s Diagnosis Won’t Defeat Her

(Huntington’s Disease News: May 7, 2019)

One family shares their experience upon an HD positive diagnosis for their daughter…


Registration Now Open for YPAHD Days – Nov. 16, 2019

Young People Affected by Huntington disease (YPAHD) Day is a one-day conference in Calgary, Toronto or Halifax, designed specifically for youth affected by HD (14-35 years of age). Learn about genetic testing, family planning, caring for someone with HD, navigating relationships, think about event planning during the round table discussions and more…!

2019 Community Education Forums

The Huntington Society of Canada invites you to attend its annual Community Educational Forum for presentations on research and caregiving. Generously sponsored by Roche and Wave Life Sciences.

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…

 Community Events

There are many events going on across Canada all summer to raise awareness and support for Huntington disease.  Check back regularly to find out what is happening in your area!


Champion of Hope

By joining our Champions of Hope monthly giving program, you support individuals and families affected by Huntington disease every single day. Our Champions of Hope provide a vital and vibrant support network, and your gifts go to work in your community and across Canada. To become a monthly donor visit click here.

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