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In the Know – February 2019

VOLUME 14, ISSUE 2

 

RESEARCH NEWS

Huntington’s disease goes viral as UniQure inches ahead in gene therapy race
HDBUZZ – January 30, 2019

FDA grants “Investigational New Drug” status to Huntingtin-lowering gene-therapy agent AMT-130, clearing path to human trials in Huntington’s Disease patients. Click here to read the full article.

ROCHE ANNOUNCES THAT THE FIRST PATIENTS HAVE BEEN ENROLLED IN THE HD NATURAL HISTORY AND PHASE III GENERATION HD1 CLINICAL STUDIES
HSC Website – January 28, 2019

Roche Pharmaceuticals sent a letter to the global HD community to provide an update on the progress of their HD clinical trials and announced that the first patients have now been enrolled in the HD Natural History and Phase III GENERATION HD1 clinical studies. Click here to read the full update.

Enrollment Completed for Phase 2 Trial Testing VX15/2503 in Early and Late Prodromal Huntington’s Patients
Huntington’s Disease News – January 22, 2019

Vaccinex has completed its target enrollment in a Phase 2 clinical trial assessing the potential of the investigational antibody VX15/2503 (pepinemab) as a treatment for patients with early manifest and late prodromal (before clinical diagnosis) Huntington’s disease. Click here to read the full article.

COMMUNITY NEWS

Eli, the Straw Man and Huntington disease
Niagara Falls Review – FEBRUARY 10, 2019

When there’s nothing you can do, sometimes it helps to do something. Anything. That’s where Tam Maiuri’s mind is as she watches her mother live and struggle with Huntington disease, a genetic disorder that slowly, methodically kills certain parts of the brain, destroying a person’s physical, cognitive and emotional abilities. Click here to read the full article.

Eli & The Straw Man: Musical Medicine for The Fight Against Huntington’s
Go/Be Weekly – FEBRUARY 12, 2019

A skilled research scientist with a potentially crippling disease enters a race against time to find a cure for the illness that’s also afflicting her mother – but not before rocking out with her super cool bandmates at a series of fundraisers designed to raise awareness of the cause. Click here to read the full article.

Canine companion a life changer for man battling Huntington’s disease
KHQ – JANUARY 22, 2019

Having to give away a dog is never easy, but what if that dog was going to someone in desperate need? One man in Post Falls is living with a brain disorder, but thanks to volunteers around the country, he was able to get a $50,000 service dog completely free. This dog has not only changed his life, it’s changed his entire family’s life. Click here to read the full article and watch the full video.

LOVE YOUR LIFE TO DEATH

At the Huntington Society of Canada’s National Conference in Kelowna, Yvonne Heath gave her presentation “I Just Showed Up”. Presenting at the Conference certainly left the HD community feeling empowered, and left Yvonne wanting to help the HD community even further. She is doing so by donating 25% of sale proceeds of her book, Love Your Life to Death: How to Plan and Prepare for End of Life so You Can Live Fully Now, to the Huntington Society of Canada. Click here for more information and to purchase your copy.

HSC NEWS

AMARYLLIS

We are thrilled to announce that the winner of the 2018 Amaryllis Photo Festival is Avery Soll from Sexsmith, Alberta. His picture received the most votes (144 votes!) and will be displayed on our webpage for the 2019 Amaryllis Campaign. He will also receive Julie Lawson Timmer’s sensational book Five Days Left as well as an HSC swag bag. Click here to see his photo!

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 to learn more about our Champion of Hope monthly giving program.

       

 


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