No. 132 Fall 2010
The $592,006 dollar investment:
HSC’s latest research funding
By Julie Stauffer Allele-specific replacement of huntingtin Cardiolipin genes as biomarkers of
As June heat waves hit southern Ontario, exon 1 Huntington disease
HSC’s Research Council, together with newly The University of Missouri’s Dr. Christian Dr. Grant Hatch, a professor of pharmacology
appointed Executive Director and CEO Bev Lorson received $105,084 to follow up on and therapeutics at the University of
Heim-Myers, gathered around the table to some very promising early studies that used Manitoba, received $75,000 to explore
select the most promising of the research gene therapy to reduce the amount of mutant the possibility of using cardiolipin gene
proposals that have flooded into National huntingtin in cell cultures. Using a virus, Dr. activity to measure the early stages of
Office. Lorson will deliver an enzyme into brain HD. Cardiolipid is a key molecule found
cells to actually repair a specific portion of in the membranes of mitochondria — cell
With 20 applications to vet, the task wasn’t the huntingtin RNA within living cells. The powerhouses that are seriously impaired
easy. “I was very impressed with the quality advantage of this technology is that it will in Huntington disease. Dr. Hatch has
of the proposals we received, and it’s result in only the reduction of the mutant already uncovered dramatic changes in the
tremendously encouraging to see so much huntingtin protein, and not the normal expression of the cardiolipid gene in the
interest in HD research,” Heim-Myers notes. protein, which has important functions in hearts of HD mice. Thanks to HSC funding,
For 2009/10 HSC invested more than half neuronal health. This is the first time this he’ll now expand his research to see if the
a million new dollars through our New technology has been applied to Huntington’s, same thing is true in brain and muscle tissue,
Pathways and Navigator research programs although it has shown promise in other potentially leading to an important tool to
in Canada and around the world – research diseases. test the effectiveness of treatments in pre-
that Heim-Myers believes will yield new symptomatic HD.
insights into HD and new therapeutic The Transporteome, an unbiased
approaches. approach to identify early defects in Therapeutic use of ganglioside GM1 in
transported proteins and signals in Huntington’s disease
“Although some of these projects involve Huntington’s disease In the past, HSC has funded Dr. Simonetta
basic science and some are more applied, Sipione’s research into ganglioside GM1,
Dr. Frédéric Sadou, head of signaling
I’m confident they all will pay off for a type of lipid naturally found in cells.
neurobiology and cancer at France’s Institut
Huntington’s families,” she says. Ganglioside levels drop in HD, contributing
Curie, received $141,200 to examine the
communication systems within HD brain to the death of brain cells. Her early studies
New Pathways cells. Every cell contains a group of proteins found that boosting ganglioside levels in
Launched in 2007/08, this program collectively called the “transporteome” that test-tube experiments protects HD cells.
supports innovative research in Canada and carry signals from one part of the cell to This year, we awarded Dr. Sipione from the
internationally into the early mechanisms another, including signals involved in cell University of Alberta pharmacology $68,525
of HD, the biomedical functions of the survival and cell death. In this one-year to see if she can obtain similar results in
huntingtin protein, the impact of CAG study, Dr. Sadou will look for differences live animals, paving the way to a possible
repeats and the role of modifier genes in HD. between the transporteome in normal mice treatment for HD. Over the coming year, Dr.
and HD mice, potentially revealing new Sipione will treat HD mice with this lipid and
pathways or processes that are affected measure the impact on motor symptoms and
INSIDE early in the course of the disease. brain biochemistry.
Defining toxic and protective
HSC Welcomes New CEO................... 3 NAVIGATOR conformations of the amino-terminus
Celebrating Our Heroes ..................... 6 The NAVIGATOR program is designed of mutant huntingtin protein at the
to fund scientific research of direct and nanometer scale by use of FLIM-FRET
Great Canadian Series – immediate relevance to HD and to encourage and HRM in live cells
The Honourable James Jerome ........... 9 outstanding investigators in Canada to We already know that some forms of the
pursue Huntington disease. protein produced by the HD gene are toxic,
2010 Conference .............................. 10
continued on page 2
HSC’s latest research funding
continued from page 1
while other forms actually protect brain cells. Dr. Ray Truant, chair of HSC’s research council,
received $74,694 over two years to identify exactly which conformations have which effects.
ISSN 0827-7605 The McMaster researcher will also look at whether the toxic conformation of huntingtin is
Horizon is the newsletter of the caused by other proteins binding to it. Since mis-folding of mutant huntingtin is a key event
Huntington Society of Canada. that leads to other cell signalling problems, this is important research that could lead to new
Published three times per year therapeutic approaches to HD.
(Spring, Fall and Winter), its purpose
Stay tuned for our Symptomatic Relief funding announcements! In partnership with the
is to convey information to individuals
the Huntington Study Group, the goal of this program is to test experimental interventions
with Huntington disease and their
that show promise of providing demonstrable symptomatic benefit.
families, health care professionals,
friends and supporters.
Huntington disease is a hereditary
brain disorder which has devastating National Office Volunteer Program
effects on both body and mind. Here in Kitchener, we’re looking forward to seeing some new faces around the office,
The symptoms, which may include
thanks to the work of Krista Lavender. Krista, who joined HSC’s Development and
uncontrollable jerking movements
Marketing Team in December 2009, has been working to expand our local Volunteer
and relentless cognitive and emotional
Program and bring more people on board to complement the dedicated team who
impairment, usually appear between
currently donate their time to HSC’s National Office.
the ages of 30 and 45, and gradually
worsen over the 10-25 year course of Our objective is to become a charity of choice for skilled individuals in Waterloo Region
the disease. As yet, there is no cure. and Southern Ontario who want to give back to their community. As the project leader,
The Huntington Society of Canada Krista will implement the plan and will seek input from our staff, our vastly experienced
is a national non-profit charitable Chapter Volunteers and our local community.
organization founded in 1973 to help We anticipate that a well-executed volunteer strategy will result in huge dividends,
individuals with Huntington disease bringing high-calibre support and expertise into HSC and building on the excellence of
and their families.
Editor: Kelly Macnab
Associate Editor: Edward Bird
Layout: Real World Graphic Design
Horizon welcomes your comments,
ideas and suggestions for future
Add Your Voice! Membership
articles. Please contact:
Huntington Society of Canada
Drive In Action!
151 Frederick St., Suite 400 Stand up and be counted as a member of Canada’s Huntington’s community. Our
Kitchener, ON N2H 2M2 members are partners in caring — there is strength in our numbers. Our members
Tel: (519) 749-7063 receive tremendous benefits for their support, but more importantly, our members
Fax: (519) 749-8965 represent a promise to the HD community: you are not alone.
Email: firstname.lastname@example.org Join as a member today and receive your invitation to an exclusive reception on
Web site: www.huntingtonsociety.ca Parliament Hill — and other exclusive benefits!
Charitable Registration #: Visit www.huntingtonsociety.ca/membership, call at 1-800-998-7398 or use the coupon
11896 5516 RR0001 on the last page of this issue of Horizon to mail in your membership today!
The Huntington Society of Canada’s NAVIGATOR research
program is supported by the following funds:
Sun Life Financial Leadership Partners: AGF Group of Funds; George Weston Ltd.;
The Joseph S. Stauffer Company; TELUS Community Connections
Family Fund Partners: Barrett Research Fund; Bloom Family Fund;
The Kelly Bumstead Family Fund; Chaplin Family Fund; Cranston-Dorr
Family Fund; Annie J. Cutler Memorial Fund; Janice Johnson Family Fund;
Sylvia Hickson Family Fund; Irwin Family Fund; Kidd Family Fund; McArthur Family Fund in
memory of Megan McArthur; Skene/Stevens Family Fund; Skeoch Family Fund; Sterling Family
Fund; Wiswell Family Fund; Wright Family Fund in memory of Helen-Mary Wright
Introducing the Society’s New CEO and Executive Director
HSC’s new leader radiates enthusiasm and “So I learned both sides of a not for profit Heart and Stroke Foundation. Moving to
energy as she reflects on her first 30 days at organization, it’s mission, and fundraising” research accountability in the non-profit
the helm of the Huntington Society. she explains. sector involved a steep learning curve. She
thrived on the challenge.
Bev Heim-Myers was captivated by the Her academic background includes a degree
position given the Society’s reputation for in business, with post-graduate studies in Now she’s applying her experience and
effectiveness in serving families, driving gerontology, the latter prompted by seeing can-do attitude to the Huntington Society
world-class research and advocating against her father debilitated by the effects of a of Canada. During the first months she’s
genetic discrimination. Everything she stroke. “There were a number of years been busy facilitating the funding proposals
has observed so far has confirmed that where I knew the person behind the stroke for HSC’s latest round of research grants,
impression. but others didn’t, and that never sat well with connecting with our global partners and
me,” she recalls. “I just thought there was a heading to Parliament Hill for a very
“It’s an incredibly dedicated team,” she says.
better way to deal with people and a better encouraging meeting with the Prime
“I feel very honoured that I’ve been the one
way to respect who they really are.” Minister’s Office, to discuss the elimination
chosen to lead this organization.”
of genetic discrimination
Her early career, however, lay in the
Bev comes from the Heart and Stroke
corporate sector. Bev held national “It speaks to the credibility of this
Foundation of Ontario where she spent the
positions at TD Bank Financial Group in organization that we have an opportunity to
last eight years, first as Senior Manager of
communications, sales and human resources take a leadership role in moving the genetic
Research and then working in the field as
before she made the targeted leap to the non-discrimination agenda forward,” she
Regional Manager, Ontario Central West,
says, praising the success of HSC’s Director
of Individual and Family Services, Jo Anne
Watton, for the fight for genetic fairness.
Back in southern Ontario, she also had a
chance to spend an afternoon with HSC
co-founder Ariel Walker. “What a great
opportunity that was,” says Bev. “You can
learn history so much better by talking to the
person who helped to create it.”
Now that she’s had a chance to get
acquainted with the organization, Bev is
looking forward to hitting the road to meet
families, volunteers, donors, staff and
researchers across the country.
While she’s cautious about setting goals so
soon after joining the Society, she sees an
opportunity to tell the Huntington’s story
more widely, bringing in more support and
creating awareness from outside the HD
community. And, of course, she’s committed
to investing in research that will lead to
treatments — and ensuring the Society has
the funds to do that, while continuing to
provide excellent support to individuals and
families living with HD
Speaking more personally, Bev notes that
her appointment to HSC has been just one
landmark in a year of head-spinning events,
including her 35th wedding anniversary
(celebrated with a trip to Italy), the birth of
her son’s first child and her first grandchild
and the up-coming marriage of her daughter
“Sometimes the universe just comes together
and this is the time for the Society to grow
beyond where we have come from in order
to evolve to where we are going. Together we
will all make that happen.” says Bev.
Bringing Care to the Community
If you’re looking for Carol Harren, chances Part of the solution also lies in educating therapists, social workers, recreational
are good you’ll find the RN somewhere on caregivers about the frustrating behavioural therapists, and community nurse clinicians,
the highways or back roads of central-east symptoms that can accompany HD: things supported by the management team at
Ontario. like apathy, impulsivity and perseveration. Ontario Shores, all working together to
“They don’t always realize that it’s part of ensure each client gets the appropriate care.
The community nurse clinician from the
the illness, it’s the brain deterioration, not
Ontario Shores Centre for Mental Health For clients with particularly complex needs,
just someone being difficult,” she explains.
Services supports her clients wherever the hospital offers short-term admissions for
they happen to be, whether it’s hospitals, She also cautions them about medications review and stabilization, or to
long-term care facilities or their own homes, misinterpreting certain behaviours. For provide cognitive behavioural therapy —
covering a territory of more than 16,000 example, while inappropriate sexual “work that’s too intense to be done at home or
square kilometres. behaviour can sometimes be a symptom of in the community,” Carol explains.
HD, a client with Huntington’s may simply
Despite all the time spent behind the wheel, And for clients outside their normal service
be removing clothing because the altered
Carol loves her job. And in particular, she area, the Ontario Shores team has even
body metabolism that is a feature of HD is
enjoys the challenge of working with her provided videoconferencing consultations via
making the individual uncomfortably warm.
clients with Huntington disease (HD). Ontario’s Telemedicine Network.
In other cases, involuntary movements can
“You have to be so creative,” she says. Every sometimes be mistaken for aggression. As more people find out about their program,
person with HD is different; even within the the hospital has begun fielding more and
Above all, Carol emphasizes the need to see
same family, the symptoms aren’t the same, more referrals from GPs, neurologists,
the individual behind the collection of HD
so Carol has to come up with strategies hospitals, and long-term care facilities. “I
symptoms. “We’re looking at the client as
tailored to the individual needs and strengths think it’s a much-needed resource that the
a whole and not just looking at the illness
of each client. “There’s no cookie-cutter community has embraced,” says Carol.
but seeing the person they were before they
approach,” she says. “Ontario Shores is committed to this client
became ill,” she says.
population and their families.”
Today she gets emails from around the
world from people who want to learn more Families don’t need a medical referral to
about Ontario Shores’ innovative approach access Ontario Shores’ services: simply call
to treating HD. the intake line toll-free at 1-877-767-9642 or
download a referral form from the facility’s
One of its cornerstones is a interdisciplinary website
approach that includes neuropsychologists, (http://ontarioshores.ca/referral.htm).
neuropsychiatrists, nurses, behaviour
Every Amaryllis Inspires Hope!
Our 2010 Amaryllis Campaign is bursting into bloom, and there are Visit www.inspirehope.ca to view our virtual Inspire Hope Amaryllis
more ways than ever for you to get involved. Garden — and read messages of hope left by others. Here, you can
You can: find details about our live Amaryllis campaign too, including how
to order kits or cases and support the cause.
• Plant a flower in our virtual garden
Every Amaryllis inspires hope. Each and every plant
• Buy your own Amaryllis kit blooming in someone’s home or office tells our story,
(containing a bulb, pot, soil and care raises awareness and critical funds for the fight
instructions) from a volunteer in against Huntington disease. Our goal this year is
your community to sell 23,400 Amaryllis kits across
• Order cases of 12 Amaryllis Canada, and you can track our
to sell to your friends, progress at www.inspirehope.ca.
neighbours and co- You can Inspire Hope today! Visit
workers www.inspirehope.ca, call us at
• Help us spread the word 1-800-998-7398 or email us at
on Facebook by joining email@example.com!
the Huntington Society of
Canada group and following
us on Twitter @HuntingtonSC.
An Ariel View Unite the
I don’t know about you, but I can hardly
believe that we are entering into fall.
humble beginnings of the Huntington
Society of Canada, where it all began.
Although spring seemed rather brief, I
managed to get my garden in, and then
We both laughed and cried as I shared
stories about the people Ralph and
seemingly summer was upon us. One
of the things that Ralph and I always
I met, the places we visited and our
never-ending purpose and passion to Hope
appreciated about living in Canada was see the world free of HD. I shared about From coast to coast, Young People
the ever-changing seasons: the way that day when Ralph and I recognized Affected by Huntington Disease
the cold, harsh winter gives way to the that the season was changing and that (YPAHD) have been busy “uniting
warmth and beauty of spring, followed it was time for us to step aside and let the fight,” organizing fundraising
by the hot, sunny days of summer, and others take HSC to greater heights. events across the country and
then the vibrant colours of the trees Let me say that I came away feeling adding a youth component to
in autumn and the crisp, white snows so good about this new season that several existing events.
again. I truly think that that was because HSC is entering into under the capable YPAHD President Brynne Stainsby
of the fact that we both enjoyed the leadership of Bev Heim-Myers and her describes the series of walks, runs
adventure that comes with change. team across Canada. As I said to her and other creative fundraisers as
I don’t think either of us could ever that afternoon, I don’t think HSC has a “relay of hope,” bringing together
survive in the midst of the same old ever had a better staff than they do at youth affected HD while also
routine, day in and day out, and keep our this moment in time. I see that this is reaching beyond the Huntington’s
sanity (although I am sure some people going to be a great season of adventure community to increase awareness,
at times questioned our sanity!). As for HSC in the days, weeks, months and raise money and tap into fresh ideas
the founders of the Huntington Society years ahead. and energy.
of Canada, we certainly saw seasonal Finally, I look forward to seeing many The initiative kicked off with
changes over these past 35-plus years, of you at the upcoming National a youth team in Halifax’s Blue
but that’s what comes with an ever- Conference in Edmonton. Just writing Nose Marathon in May. Further
growing, ever-expanding Society like that brings back a flood of great west, YPAHD members organized
ours. We quickly learned to embrace memories, but I have to prep my garden a scavenger hunt and a pub night
those changes and realized that they for winter if I am going to make it to the in Toronto, youth participation in
were seasons to be enjoyed, not life conference. See you in November! the Regina chapter’s walk and a
sentences to be endured.
singles auction in Alberta that saw
Well, this past June I felt like a fresh an audience members bidding
breeze of spring blew into my home on a succession of bachelors and
in Cambridge when the new CEO, Bev bachelorettes.
Heim-Myers, stopped by for a visit. She
Still to come are baseball and golf
came to hear the history and see the
tournaments, as well as the annual
“Hike 4 Huntington’s” in Vancouver
this September, which will include
Brynne is enthusiastic about the
results to date. “They’ve been very
successful in terms of bringing
new people out, as well as from a
fundraising perspective,” she says.
“I think everyone’s been having a lot
The relay will wrap up at the
National Conference in Edmonton in
November, “bringing the torch back,”
says Brynne. But given the success
of this youth-led effort, YPAHD
could soon be organizing Unite the
Bev chat in Ariel’s home, Fight 2011.
Ariel (left) and
Celebrating Our Heroes – Family Profile:
The Kuzyk Family
By Julie Stauffer
For almost as long as the Huntington Society of Canada has been
around, the Kuzyk family has been a part of it. Diane Kuzyk first
contacted Ralph and Ariel Walker in 1974 after her mother was
posthumously diagnosed with HD. The family knew something
had been wrong with her, like her father before, but it wasn’t until
the autopsy that they had a name to attach to her symptoms.
Diane and her husband John were quickly persuaded to start an
HSC chapter in Edmonton. An ad in the paper drew 29 people to
the first meeting, everyone cramming shoulder to shoulder into
the Kuzyks’ modest living room.
In the early days, daughter Cheryl recalls, the chapter would
do just about anything to raise funds: collecting newspapers for
recycling, selling Christmas cards, organizing legendary garage
sales. The more they did, the better they got, raising a total of (l-r) Cheryl, Diana, Diane & John
more than $1.5 million over the past three decades.
When the media wanted a quote or geneticist Stephen Bamforth
The biggest emphasis, however, was always on providing social was looking someone to speak to his University of Alberta class
support. As a teenager, before the Northern Alberta Resource about HD, her mother was always ready to step in. Diane wrote
Centre was established, Cheryl would see Huntington’s ads on the newsletter articles about living at risk and, together with long-
local buses that listed the Kuzyk family phone number as a source time chapter members Marj McIntyre and Betty Voelker, drove
of more information. across the northern half of the province to meet with families and
healthcare professionals in scattered communities.
Cheryl praises her mother’s honesty in speaking up about the
disease. “Mom chose never to hide the fact that there was That hard work earned Diane and her family an award from
Huntington’s in the family,” she says. “It’s a fact of life that we’re at the Premier’s Council in Support of Alberta Families in 1992,
risk for Huntington’s. This is who we are.” recognizing their efforts to support the HD community in northern
Alberta since the mid-1970s.
Nor did the family let the threat of inheriting the gene put a stop
to their outgoing, live-life-to-the-fullest philosophy, marked by Meanwhile, John has always been there to quietly do what needed
frequent family get-togethers, season tickets to the Edmonton doing. “He’s the Duracell battery,” Cheryl says. Now in his 80s,
Eskimos and celebrations of all kinds. When Diane was diagnosed he’s still willing to drop his gardening and organize bingo rosters,
in 1987 at the age of 53 she and John packed their bags and chauffeur volunteers and sell Amaryllis every fall.
travelled the world as frequently as possible before her symptoms
As Cheryl recounts the long list of chapter efforts over the years,
became too severe.
somehow the conversation always turns to how much fun the
Four years ago, they were able to celebrate their 50th wedding group had: the friendly competitions to see how many raffle
anniversary with more than a hundred friends and relatives. And tickets they could sell at the local Safeway, for example, or the
although Diane subsequently moved into St. Joseph’s Auxiliary dancing after the AGM at the annual chapter Christmas party.
Hospital, that didn’t stop the Kuzyk family from marking her 75th
Now everyone is focussed on hosting the National Conference this
birthday last year in fine style.
fall, which they hope will attract plenty of Huntington’s families
When an outbreak at St. Joe’s scuttled the original plans for from Wild Rose country.
an open house there, the family simply shifted gears and
“We are so excited,” says Cheryl, who heads up the local planning
invited dozens of guests join them at St. Paul’s United Church
committee. “We are just thrilled beyond the moon.” She cites
instead — the site of chapter meetings for many years.
the fabulous keynote speaker they’ve lined up — humorist and
Since the founding of the Edmonton chapter, the Kuzyk family has best-selling author Phil Callaway, who will talk about his family’s
been stalwart members. Diane, John, Cheryl and Diana have all experience with HD — as well as plenty of music and dance
served on the executive for many years. With the chapter meetings performances guaranteed to make the Friday night reception a
now held at St. Joe’s, Diane continues to take part, although she lively event.
jokes that she now serves in an “ex officio” capacity.
While Diane’s health has begun to deteriorate lately, the Kuzyk
Over the years, Diane seized every opportunity to cram in family hopes she’ll be able to attend some of the conference and
Huntington’s work between the demands of a nursing career and reconnect with Ariel Walker, who has promised to be there. It
raising four children. “I really have been amazed at the person will be a fitting way to celebrate 34 years of involvement with
my mother became because of the challenges of trying to do the Society. And, as Cheryl says, the Kuzyk family is all about
something about the disease,” Cheryl says. celebrations.
Delaying the Age of HD Onset
While there’s still no cure for HD, a new spending long periods of time in passive Your lifestyle as a teenager has the biggest
study from Down Under suggests that gene- activities. impact, researchers discovered, but
positive people can push back the onset of staying active in your 20s and 30s pays off
That doesn’t mean you can’t kick back in an
HD by changing their lifestyle. as well.
armchair to watch your favourite TV show,
A survey of more than 150 people with HD he emphasized in an interview with the Interestingly, the study also revealed
in Australia and New Zealand revealed that Australian Broadcasting Corporation in May. that longer CAG length causes
people who were active — either physically more passive behaviour, even in
“All of us need down time,” explained
or intellectually — developed symptoms as adolescence — additional evidence that
Delatycki, who heads up the Bruce Lefroy
much as 4.6 years later than their couch signs of HD begin long before a clinical
Centre for Genetic Health Research at the
potato counterparts. diagnosis. But even once that effect is
Royal Children’s Hospital in Melbourne.
taken into account, too much time spent
Genetic factors such as CAG length have “What we’re saying is don’t spend hours a
watching TV, chatting on the phone or
the biggest influence on the age of onset, but day in passive activities. Find activities in
working at an undemanding job appears to
it’s now clear that the physical and mental your life that have physical and intellectual
hasten the onset of Huntington’s.
challenge of jobs, education and leisure elements.”
activities also play a measurable role. So play a musical instrument, learn
The study results, published in the March
a new language, hit the tennis courts
And while you can’t control your CAG length, 29 issue of Movement Disorders, back up
or just take a walk. “For the first time,
you can control your lifestyle, making this a lab experiments that show an enriched
there is something that people at risk of
very empowering discovery. environment can delay the onset of HD
Huntington’s disease can do to delay the
symptoms in mice. It also mirrors the results
Lead researcher Dr. Martin Delatycki onset and hopefully slow progression of
of similar studies in people living with
advises people who carry the gene to avoid the condition,” said Delatycki.
Alzheimer’s, Parkinson’s and dementia.
My Brain Matters WELCOME TO
The NEUROLOGICAL HEALTH CHARITIES CANADA (NHCC) is a collective of organizations
that represent people with chronic, often progressive, neurological and/or neuromuscular
diseases, disorders, conditions and injuries (brain disorders) in Canada. The NHCC’s
role is to provide s rt of t ada
in support of the Huntington Society of Canada
and advancing new
to advocacy, education
and research projects,
related to brain
health. HSC is an
active partner in this
organization along with
17 additional sister
charities all working
The NHCC has recently
launched a new
website called My
Brain Matters www.
Saturday, February 26, 2011
Please take a moment 7:00 p.m. at the Liberty Grand
to visit the site and
register to receive the
25 British Columbia Road,
e-newsletter Brain Toronto
Matters. Learn more Tickets $135
about Canada’s Brain
Strategy and the latest www.hsccasinoroyale.ca
research development. firstname.lastname@example.org
Sign Up Today!
Physicians sign up for HD 101
Across North America, dozens of centres provide top- responsibility to make sure that as many clinicians as
notch care for people living with HD. They’re staffed possible know how to do the right thing for people with
by medical specialists who understand the nuances of HD.”
the disease, backed up by multi-disciplinary teams of
After months of planning, the inaugural workshop
physiotherapists, nutritionists, genetic counselors and
last March proved to be a resounding success. A total
of 35 neurologists and psychiatrists from across
But where does that leave the thousands of others the continent — 10 from Canada and 25 from the
families — a full 80 to 90 per cent of people with HD, U.S. — gathered in Ottawa for the weekend.
according to U.S. estimates — who don’t have access to
Some were recently qualified physicians, while others
had established practices but wanted more insight into
It’s a question Ontario neurologist Mark Guttman has the most effective ways to serve their Huntington’s
been pondering. “How can we get more people involved patients.
in providing excellent care to Huntington’s patients?” he
While the workshop was free for participants, thanks
asks. Unless physicians happen to get their training at a
to the generosity of CHDI, it certainly was no cakewalk.
centre with large numbers of HD patients, their exposure
Participants faced a gruelling schedule of neurology,
to the disease can be extremely limited.
psychiatry and genetics lectures coupled with breakout
His answer: develop workshops targeting neurologists sessions where they grappled with the details of specific
and psychiatrists who treat HD patients but lack cases.
The weekend also included research updates and
The goals were threefold: improve their clinical skills presentations from HSC and HDSA on the services they
in treating Huntington’s, convince more newly minted provide. Despite the long hours, the room crackled with
physicians to specialize in the disease, and increase the energy and excitement.
number of centres participating in clinical trials.
“The feedback we got was excellent,” says Dr. Guttman.
Together with Dr. Martha Nance, who directs the “People really enjoyed it.”
Huntington’s clinic in Minneapolis, he pulled together a
If all goes well, the Ottawa workshop will be the first of
two-day crash course. Dubbed “HD 101,” it’s modelled
many. With only a little tweaking, Dr. Guttman believes
on similar movement disorder workshops Dr. Guttman
HD 101 could be run across North America on a regular
has been running for Canadian neurology residents since
basis. “I think it’s ultimately going to change how we help
clinicians help people with Huntington’s disease,” he
CHDI agreed to fund a trial workshop, while HSC and the predicts.
Huntington’s Disease Society of America (HDSA) both
HSC’s Jo Anne Watton agrees. “I was thrilled to see the
came on board to help organize it. In fact, as Dr. Guttman
number of physicians and psychiatrists coming together
tells the story, former HSC Executive Director Don
to discuss the care of people with Huntington disease,”
Lamont actually hugged him after hearing the idea.
says the Society’s Director of Individual and Family
“It’s an unmet need,” the movement disorders specialist Services. “I believe this will improve patient care across
explains. “As so-called experts in the area, we have a Canada.”
is going green!
Horizon is now being distributed
electronically. If you would like to
receive Horizon by email please fill
out the contact form on the HSC
or contact us directly at
Inaugurating the Huntington Society of Canada’s Great Canadians Series:
A Commemoration of the Honourable James Jerome
On Tuesday October 5th, the Huntington Society of Canada will
launch the Great Canadians Series – a unique, national program
honouring great Canadians touched by Huntington disease who have
made significant contributions to our nation.
For our inaugural event, we’re delighted to salute the late James
Jerome, Speaker of the House of Commons from 1974–79, who
succumbed to Huntington disease in 2005. In addition to recognizing About James Jerome
this widely respected parliamentarian and jurist, the event will raise (March 4, 1933 – August 21, 2005)
funds for the Honourable James Jerome Great Canadian Fund.
James (Jim) Jerome was a
The Honourable Peter Milliken, current Speaker of the House of jurist, politician and widely
Commons, has graciously agreed to co-host the evening. This admired speaker of the
reception will allow those who wish to honour James Jerome and his House of Commons.
accomplishments to pay tribute to a Great Canadian.
After graduating from
law school, he ran a
law practice in Sudbury,
Great Canadians Series Honourary Committee
Ontario for several
The Honourable Peter Milliken years before making the
Speaker of the House of Commons leap into politics. He
began at the municipal
The Right Honourable Joe Clark level, winning a seat on
and Ms. McTeer Sudbury’s city council in
1966. The following year
The Right Honourable John Napier Turner
he ran unsuccessfully for the federal Liberal party in a by-
The Honourable André Ouellet election but took the seat in the 1968 general election and
and Mrs. Ouellet held it through three subsequent elections.
Senator Mike Duffy In 1972, Jerome was appointed Chairman of the Standing
Committee on Justice and Legal Affairs. Heading up a
Senator Marie Paule Poulin committee dominated by opposition members, he quickly
and Mr. Poulin developed a reputation for impartiality, good humour and a
formidable grasp of parliamentary procedure – a reputation
Lieutenant General (Retired) James Gervais that led to his appointment as Speaker of the House of
and Mrs. Gervais Commons in 1974.
Max Keeping He proved to be highly influential Speaker, playing a
CTV Community Ambassador pivotal role allowing television cameras into the House
of Commons – making Canada the first country in the
Publisher, Ottawa Citizen world to broadcast complete coverage of its parliamentary
proceedings – and launching the House of Commons Page
Doris Ramphos Program, giving young Canadians an opportunity to witness
Community Engagement Advisor the legislative process first-hand.
Ariel Walker Although power shifted to the Progressive Conservative
Co-founder of the Huntington Society of Canada Party following the 1979 election, the new government chose
to keep Jerome as Speaker – the first time a member of an
Geoff Smith opposition party was chosen to preside over the Canadian
President, EllisDon House of Commons. As Prime Minister Paul Martin later
said, Jerome “brought dignity, an abiding respect for rules
and traditions, and a deep commitment to Parliament as a
If you wish to make a contribution to the James Jerome Great fundamental institution of Canadian democracy.”
Canadians Fund, please use the return form on the back of your
copy of Horizon and indicate that your donation should be directed When a non-confidence motion triggered an election later
to this fund. that year, Jerome decided not to run again. Instead, he was
appointed Associate Chief Justice of the Federal Court, a
position he held until his retirement in 1998.
Jerome developed Huntington disease late in life, passing
away in 2005 at the age of 72.
The HSC National Conference 2010
Family Life with
The Early Years
The Huntington Society of Canada This year’s special focus:
Invites You To Join Us Family Life with HD — The Early Years
For The HSC National Conference 2010 Knowledge Integration: More than 2 days of world-
class speakers and interactive workshops covering the
latest in HD research, care and tactics to enrich the HD
Sutton Place Hotel, Edmonton AB Networking: A great opportunity for individuals
November 11–14, 2010 affected by HD, caregivers, volunteers, professionals, and
researchers to learn and connect with others in the HD
Hosted by the HSC Edmonton Chapter community.
• Fostering the healthy development of children and
youth living in the Huntington community
• Insights into the earliest stages of HD — before
• Optimizing life with HD using the latest research
• The beneﬁts and limitations of pre-implantation
• Updates on the ﬁght against genetic discrimination
Many engaging speakers including:
Dr. Yvonne Bombard, Phil Callaway, Jeffrey
Carroll, Dr. Wayne Martin, Dr. Oksana
Suchowersky, Alicia Semaka, Dr. Ray Truant,
Dr. Edward Wild, Dr. Benjamin Wong, and
For more information, call 1-800-998-7398
MEMBERSHIP DRIVE: Add Your Voice Today!
This Fall, the Huntington Society of Canada stand in solidarity with HD families each • Invitation to join exclusive CEO Circle
is having a membership drive to encourage and every day. Government, foundations, and receive personal updates from the
members of the Huntington’s community to potential donors and the broader public Society’s CEO via a quarterly phone
stand up and be counted. recognize us as a movement based on our call — Lifetime Members Only
number of members.
Make your membership gift this fall and Please, stand up and be counted as a
start receiving your amazing benefits right member. Buy your annual or lifetime
away. You will be invited to an exclusive Your Membership Benefits membership today and start receiving your
reception on Parliament Hill and invitation As a member of the Huntington Society of benefits right away. Make a promise to
and voting rights at our fall annual meeting. Canada, you receive the following benefits: families confronting HD and show them they
And if you join as a lifetime member you will are not alone.
also be invited to a special reception at the • Invitation to exclusive reception on
Parliament Hill launching The Great We are calling on all members of our
conference and be included in our CEO’s
Canadians Series remembering The community to stand up and be counted.
Honourable James Jerome, former Speaker Today.
Our members are partners in caring — there of the House of Commons
is strength in our numbers. Canadians
living with HD, and their families, endure • Invitation to any HSC event in your
You can use the coupon below to
discrimination and stigma associated with community
mail in your membership today.
this rare, complex and misunderstood • Your copy of Horizon, our newsletter,
disease. Our members add their voice to You can also visit
delivered in print or electronically based
our chorus – and bravely step forward on your preference
to be counted as a caring member of our
• Invitation to every Annual General Meeting for more information and to make
your payment online, or you can
• Voting rights at Annual General Meeting
Our members receive tremendous benefits call us right now at
for their support, but more importantly, our • Invitation to join a special reception at 1-800-998-7398.
members represent a promise to the HD the Annual General Meeting — Lifetime
community: you are not alone. Our members Members Only
RETURN FORM 2200
Enclosed is my Annual Membership donation ($25 per person) Method of Payment:
Enclosed is my Lifetime Membership donation ($250 per person) Cheque Visa Mastercard
Enclosed is my donation of $ ____________ to further the fight Credit Card # : _______________________________________________
against Huntington disease.
Expiry Date : ____________ Signature :_________________________
I would like to remain anonymous
Please send me more information on the following programs: Name: ______________________________________________________
Our Champions of Hope monthly giving plan
Ralph and Ariel Walker Summit Society
Please contact me on how I can volunteer for the Huntington Society _____________________________________________________________
Please send me more information about getting involved in the
Society’s fundraising programs. City : _______________________ Province: ______________________
Our Family Funds
Postal Code: _________________ Phone #: ______________________
Please add my name to the Horizon mailing list.
Please remove my name from the Horizon mailing list. Email: _______________________________________________________
Please print the name(s) as you want it to appear for recognition purposes Please note my change of address:
(eg. The Smith Family or Mr. & Mrs. John Smith or Mary & John Smith)
Effective : ___________________
Dear HSC, disease. Unfortunately, the stigma of Huntington’s
hasn’t completely disappeared.
Dear HSC … Today there’s still a very real possibility of being
What’s with all the talk about advocacy lately? Is this a new refused insurance, charged unaffordable premiums,
direction for the Huntington Society? I thought the goal of the being passed over for promotion or even refused a
organization was to fund research and provide family services. job if you have a family history of HD.
Claudia, Waterloo, ON We need to speak up on this issue.
That’s why we’re working with the Canadian
Coalition for Genetic Fairness (CCGF) to end genetic
discrimination — something that will benefit all
Actually, HSC has a long history of speaking out to improve the Huntington’s families as well as millions of other
lives of Huntington’s families and make sure their needs are Canadians at risk for genetic diseases.
met. In a nutshell, that’s what advocacy is all about.
By teaming up with other health charities and with
At an individual level, our resource centre directors and supportive politicians, we’re creating a powerful voice
Individual and Family Services workers make sure families for change. But your voice is important too.
can access the community services they need. We also educate
Consider calling, emailing or visiting your
healthcare providers to make sure that people living with HD
MP to explain that you want action on genetic
get the best possible care.
discrimination. Members of Parliament really do care
At the community level, we advocate for better resources. The about the issues facing their constituents, but they
new multidisciplinary HD clinics we’ve helped to establish in won’t know what’s important to you unless you tell
Halifax, Ottawa and Saskatoon over the past year are excellent them!
examples of what we can achieve by making our needs known
Need a little help approaching your MP? You can find some
and working with partners to create solutions.
great resources in the “Take Action” section of the CCGF
Nationally, we’ve helped to bring Huntington’s out of the closet website (www.ccgf-cceg.ca), or call Jo Anne Watton at HSC
over the past 35 years, reducing the shame and stigma of the National Office at 1-800-998-7398 ext. 32.
Return undeliverable Canadian addresses to:
151 Frederick St., Suite 400