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In the Know – June 2019

VOLUME 14, ISSUE 6

 

RESEARCH NEWS

Mining 25 Years of Data Uncovers a New Predictor of Age of Onset for Huntington disease

(UBC Faculty of Medicine: May 16, 2019)

Investigators at the University of British Columbia (UBC) Centre for Molecular Medicine & Therapeutics (CMMT) and BC Children’s Hospital have examined more than 25 years of data to reveal new insights into predicting the age of onset for Huntington disease.

Why Adults at Risk for Huntington’s Disease Choose Not to Learn if They Inherited Deadly Gene

(Georgetown University Medical Centre News Release: May 16, 2019)

As many as 90 percent of individuals who have a parent with Huntington’s disease (HD) choose not to take a gene test that reveals if they will also develop the fatal disorder — and a new study details the reasons why.

Project Overview: Huntingtin and its Interaction Partners

(OpenLabNotebooks.org: June 10, 2019)

Jacob McAuley @thesgconline starts his open lab notebook and explains his goal to express and purify proteins found to interact with Huntingtin, the protein behind Huntington’s disease.

Virtual Reality May Help Stimulate Memory in People with Dementia 

(Medical News Today: May 16, 2019)

The results of a new study suggest that virtual reality could make life easier for people with dementia. The authors conclude that virtual reality helped the participants recall memories and contributed to an improvement in patients’ relationships with caregivers.

Scientists Recreate Blood-Brain Barrier Defect Outside the Body

(Cedars-Sinai Medical Centre News Release: June 6, 2019)

Scientists can’t make a living copy of your brain outside your body. That’s the stuff of science fiction. But in a new study, they recreated a critical brain component, the blood-brain barrier, that functioned as it would in the individual who provided the cells to make it.

Scientists Create Brain Structure Duplicate to be Used in Research

(Jerusalem Post: June 9, 2019)

A model of the human brain that can be used to analyze and study brain disorders to potentially predict which drugs will work best for individual patients has been created by scientists at Ben-Gurion University.

HSC NEWS

2019 “LightItUp4HD”Shines Brightly in May

(HSC Blog Post: June 11, 2019)

May was Huntington disease (HD) Awareness Month and by all accounts, it was one of the most successful ever.

HD COMMUNITY NEWS

Heroes on Hunt for Cure for Huntington Disease

(Winnipeg Free Press: May 27, 2019)

Having the wife of a legendary folk singer in your living room is something few Winnipeggers can claim to have experienced. But for Vern and Ellen Barrett, it’s one they’d rather not have had, considering the circumstances.

Sauble Beach Sisters Organizing Fundraiser for Huntington Society

(Owen Sound Sun Times: May 21, 2019)

Huntington’s has been called one of the worst diseases known to man. And Sauble Beach resident Shaunacy DeJong has seen the effects of the hereditary brain disorder first hand, as her mother is in the later stages of the incurable illness.

Durham Walk to Cure Huntington Disease Media Coverage

(Facebook Post)

Join Bunny L. Clark and myself (Darryl Callahan) as we talk about Huntington disease and bring awareness to this disease.

*Audio Required*

The Impact Huntington’s Disease Can Have on a Family

(CBC News: May 20, 2019)

Throughout Patricia Delyea’s life, several members of her family have fallen ill and died. Today, her family knows the cause is Huntington’s disease. But for years, she had family members get sick and no one could provide answers.

Coverage of Wildflower Walk and Forest Tea to Support HSC 

(Five Points Media: May 23, 2019)

*Audio Required*

Thrill of lifetime as Huntington’s mother ticks skydiving off her bucket list

(The Herald: May 18, 2019)

Gillian, a nurse and mother-of-three, has vowed to live life to the full after being diagnosed with the gene for Huntington’s Disease eight years ago. Determined to keep a positive attitude, she drew up a list of adventures to embark on before the inevitable onset of this cruel disease.

SUPPORT AND PROFILES

Transforming Our Grief by Just Showing Up

(Tedx Talk: May 16, 2019)

Working in healthcare for almost 30 years, Yvonne Heath realized that many people are ill-prepared to navigate through grief, heartache and life’s challenges and suffer excessively. But there is a better way.

*Audio Required*

Northern Lights Over Timmins

(Craig Morgan Photo Blog: May 14, 2019)

The Old McIntyre Shaft was apparently lit up in hues of blue light that morning in awareness of Huntington’s disease. Don’t know what it is? Google it, neither did I. That’s the beauty of awareness campaigns, it makes people aware!

HSC EVENTS

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…!

NOTE: Funding opportunities are available but the deadline to apply is June 28, 2019.  Click here for more information.

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, Wave Life Sciences and uniQure.

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.  Click here and check back regularly to find out what is happening in your area!

HOW YOU CAN HELP

2019 Amaryllis Campaign

Our beautiful “Orange Souvereign” blooms are back! The Amaryllis is the signature flower of the Huntington Society of Canada. We have Amaryllis volunteers across the country who sell bulb kits to help raise vital funds for our programs in research, services and education.

We are excited to kick off the 2019 Amaryllis Campaign with our Early Bird Contest! If you place your orders by July 1, you will be eligible for our 2019 Early Bird Prize: A Kindle and a copy of Julie Lawson Timmer’s extraordinary book, Five Days Left.

To order your Amaryllis, visit our website at www.inspirehope.ca, email us at amaryllis@huntingtonsociety.ca or call 1-800-998-7398. Orders can be made at any time, with delivery dates from October 2 to December 6, 2019. Order today for your chance to win the Early Bird Prize!

Thank you for your continuing support and all you are doing to help us Inspire Hope!

Champion of Hope

Did you know that a donation of $25/month provides a mentor the support and resources required to mentor a youth from our HD community. Click here for more information on how to become a monthly donor today!

A Legacy of Strength, Courage and Grace 

You can purchase a beautifully designed t-shirt in memory of Victoria St. Amand. The t-shirts are being promoted to continue Vicki’s legacy of raising funds for HD research and services. The t-shirt will be mailed to you for a donation of $40, which includes shipping. You can make a donation and order online by clicking here.


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