Dystonia Canada Report A Newsletter from the Dystonia Medical Research Foundation Canada
Fall 2018 2018 Jackson Mooney Patient Grant Recipient:
IN THIS ISSUE
Sarah Anderson
MANAGING DYSTONIA AND PAIN – The Four Components With Dr. Gordon Ko, MD
Full story on page 6
+ PLUS 1 2 3
September is Dystonia Awareness Month! See What You Can do to Help Announced: New Dystonia Research Funding New Ambassador: Paralympic Hopeful Shelby Newkirk Joins Laps of Love Campaign
2018 RENEWAL NOTICE! Support DMRF Canada with a minimum donation of $40 annually and you will continue to receive the latest news and information about dystonia. Renew today and you will receive:
• • • •
Two issues of the Dystonia Canada Report mailed to you each year; Six issues of the Moving Forward E-newsletter delivered to your inbox; Ongoing special notices of events and activities in your community; A tax receipt for your gift.
Dystonia Medical Research Foundation Canada The Dystonia Medical Research Foundation (DMRF) Canada is a registered non-profit Canadian charity founded in 1976 by Samuel and Frances Belzberg of Vancouver, British Columbia. DMRF Canada funds medical research toward a cure, promotes awareness and education, and supports the well-being of affected individuals and families. We work in partnership with the DMRF in the United States to ensure funding of the best and most relevant dystonia medical research worldwide and with other like-minded research organizations to fund excellent dystonia research in Canada.
Board of Directors Co-Founder Samuel Belzberg (1928 - 2018) Vice President Frances Belzberg Secretary/Treasurer Pearl E. Schusheim Directors Grant Connor
Foundation Update Dear Friends, The mission of the Dystonia Medical Research Foundation (DMRF) Canada is simple: To fund research that leads to treatments and ultimately a cure, and to provide information and support for all who are affected by dystonia. Thanks to the support of our many generous donors like you, DMRF Canada has been able to fund research that is generating potential new treatments and leading us toward a cure, provide accurate information for patients and loved ones, and offer programs to improve the daily lives of those living with dystonia.
dystonia community. Thank you for your contributions. With your support, we know we will be able to make significant strides in finding a cure for dystonia. Sincerely,
Stefanie Ince Executive Director, DMRF Canada stefanieince@dystoniacanada.org
As a generous supporter to the dystonia community, we wanted to remind you that your donations continue to make an important impact within the DMRF Canada is proud to partner with the Dystonia Medical Research Foundation (DMRF) to fund critical dystonia research. Scientific advancement in dystonia is possible due to support from the DMRF and the research environment the Foundation built over decades. Investment in basic research has led to sophisticated genetic studies and unprecedented drug discovery efforts.
Heather Connor Dennis Kessler Frederick Latendresse Rosalie Lewis Bill Saundercook Tim Williston Scientific Advisor Mahlon DeLong, MD
The 2017 Annual Report is Now Available. Visit: https://dystoniacanada.org/2017annualreport
We’ve Moved! Canadian donations should be sent to: Dystonia Medical Research Foundation Canada 550 St. Clair Ave West, Suite 209, Toronto ON, M6C 1A5 www.dystoniacanada.org/donate It is the editorial policy to report on developments regarding all types of dystonia but not to endorse any of the drugs or treatments discussed. DMRF Canada encourages you to consult with your physician about procedures mentioned herein.
Paralympic Hopeful Shelby Newkirk Joins Laps of Love Campaign It’s such an exciting time for Laps of Love. Please help me welcome Para-Swimmer, Paralympic hopeful for Tokyo 2020 and two-time Canadian world record holder, Shelby Newkirk. Shelby is a 22-year-old para-swimmer who was diagnosed with generalized dystonia eight years ago. She’s making waves in the swimming world by shattering the S7 women’s 50m backstroke and her own world record in the S7 100-metre backstroke—twice in one day at the Canadian Swimming Trials in Edmonton earlier this summer. Shelby reached out to Laps of Love this summer wishing to join the campaign with a shared goal to help build dystonia awareness. I couldn’t be happier to have such an enthusiastic addition to the team. Shelby and I have connected on a dystonia front as well as on our passion for swimming. Shelby has contributed 1,608 laps, bringing our laps total to 5,500 laps! We have made it past the 50% mark!! Thanks Shelby! We are rooting for you! See you in the pool, Sumbul
Visit https://www.dystoniacanada.org/lapsoflove and help support Shelby and Sumbul reach their fundraising goal and support the important Laps of Love campaign.
Harry Lovering, Hamilton Support Group Leader DMRF Canada wishes to express our deep sadness at the loss
In Tribute
of Harry Lovering, who died
DMRF Canada extends our condolences and gratefully acknowledges the generous gifts received in memory of the following.
group together, allowing members from the Hamilton
Barbara Fagrie
Hazel McAdam
passed away at St. Joseph’s Hospital in Hamilton, where
Lynn Frederiks
Julie Mintz
he was born in 1932. On behalf of the many members
Peter Klassen
Stevie Schwartzberg
Harry Lovering
Ethel Waines-Main
Alice Joyce Low
Peter Naylor
peacefully surrounded by his family. The Hamilton Group is so very grateful that Harry was able to put the communityome together as dystonia patients without driving to Toronto. Harry helped to put together the very first Hamilton ‘Walk’ n’ Wheel’ event in 1996. Harry
of the Hamilton Support Group who benefitted from Harry’s leadership, our deepest sympathies to Harry’s family for this loss.
Sharing Our Stories One of the ways for us to combat anxiety and isolation is to come together as a community. We are proud to partner with dystonia bloggers that are living with dystonia and are a voice for the community. For a list of some of the dystonia bloggers we love, please visit: www.dystonicanada.org/bloggers. If you have recommendations or read about other dystonia patients working hard to ‘defy’ their own dystonia., please let us know! Email info@dystoniacanada.org. Read our dystonia patient stories at: www.dystoniacanada.org/patient-stories
1
WALKING, RUNNING, WHEELING, WORKING TOWARDS A CURE DMRF Canada is grateful for the efforts of all volunteers, participants, sponsors, supporters and donors, who work to improve dystonia awareness, raise funds for medical research, and come together to provide a safe and caring community for patients. This year’s Freedom to Walk and Scotiabank Charity Challenge Events have raised over $80,000 for dystonia research. Thank you for your support.
Chuck’s Run, Walk, and Wheel for Dystonia
“
It was another fabulous event, with over 150 walkers, runners and wheelers, plus over 150 volunteers, family and friends. Thank you for coming out every year, to show others about the power of our community.
My experience with Chuck’s Run has been uplifting, and rewarding, and has erased the version of myself who viewed dystonia as a solitary burden that only I could understand. I’ve learned that events like Chuck’s Run aren’t about lamenting over challenges, or comparing battle scars, or wishing that life were somehow different. They are about family, and community, and celebration. – John Fraser, Chuck’s Run fundraiser and local area contact. For John’s complete story on his Chuck’s Run experience, visit: www.dystoniacanada.org/johnsstory
Our thanks to Merz Pharma Canada Ltd. our Platinum sponsor, and Ipsen Biopharmaceuticals Canada Inc. for their very generous support
Dystonia Support Group of Sudbury & District Walk-and-Wheel 2018
What an amazing Dystonia Walk-and-Wheel we had! Not only did we have a beautiful day, but 28 wonderful people showed up to raise over $20,000 for dystonia research and support programs. This year, a milestone was reached when Dwayne Backer brought in $11,818, bringing the total amount that he has raised over the last 18 years to over $100,000. In this time frame Dwayne raised $103,308 for dystonia medical research. The top prize winners for the most
1) Dwayne Backer
3) Coco Lariviere and
pledges obtained were:
2) Richard & Mary Guy
4) Lauraine Blais.
These prizes were donated by DMRF Canada. Congratulations to all of you! A very special thank you to Linda Thompson for once again organizing the BBQ. Food donations came from Linda Thompson, Chris Y.I.G., Tim Horton’s and our dystonia fund. Thank you to Harry Thompson and his son, Kyle, for the delivery and use of their BBQ. Thanks to our chefs, Linda Thompson and Denise St. Georges. Door prizes were donated by Barrydowne Paint & Wallpaper, BBT Machining Inc., Maureen Clement, Rico Johnston, M&M Meats, Querney’s Office Plus, The Rainville Clan, Scotiabank and Topper’s Pizza.
Thank you to all the donors for your generosity. Thank you to our experienced desk crew of Brenda Morris, Lise Depatie and Sue Leroux for setting things up and keeping track of the walkers and the money that they brought in. Everyone was so helpful it made set up and take down a breeze. A very big thank you to everyone who sponsored our walkers and everyone who helped in making the walk such a success. Gratefully yours, Mary Guy, Support Group Leader Sudbury and District
Hamilton Walk and Wheel for Dystonia – 2018 This year’s Hamilton Walk, and Wheel for Dystonia went very well, with a new face taking the lead with event planning! Ashley, our Lead Volunteer, and her wonderful team of volunteers did a great job. We had 81 participants with many familiar faces and supporting us. Thank you for another wonderful event. Together we raised over $4,000 for dystonia research and support programs! 3
Funds Raised from Scotiabank Charity Challenge in Montreal and Vancouver Benefitting Dystonia Research and Support “I joined this walk because I wanted to share and spread awareness of dystonia. It took me 20 years (after I was diagnosed), to actually get in contact with someone who had the same diagnosis than me. These 5 KMs mean more than just being able to walk again. To me it means I can be there for someone who needs the support of someone who understands exactly what they are going through. Let’s be strong together!”
– Jessica O, Vancouver Walk Leader
A Community Strong: Support for Patients You are not alone. There are dozens of local support groups, area contacts, and individuals who have dystonia who are waiting to hear from you. Visit: www.dystoniacanada.org/connect.
Webinar for Parents of Children Who Have Dystonia When a child is diagnosed with dystonia, parents may not know where to turn. The process of diagnosis and coping with symptoms can be overwhelming. Join Stefanie Ince, Executive Director, DMRF Canada, and Inge A. Meijer MD, PhD, FRCPC for a special webinar presentation on Thursday, November 15, 2018 at 7:00 PM EST. To RSVP for this session, please email info@dystoniacanada.org If you do have a specific question please include it in this email request.
Funding critical Dystonia research here in Canada:
DMRF Canada Funds Dystonia Research in Partnership with Banting Research Foundation We are thrilled to announce that together with the Banting Research Foundation, DMRF Canada is proud to support Nomazulu Dlamini, MD PhD. Neurology, from The Hospital for Sick Children (SickKids). Dr. Dlamini’s research project, entitled: Neural network reorganization and maladaptive plasticity in dystonia post childhood basal ganglia stroke: a developmental model for the investigation of the neurobiological substrate of dystonia, was selected to be the DMRF Canada supported Discovery Award grant for 2018. The Banting Research Foundation Discovery Award supported by DMRF Canada is a one-year grant of $25,000. Dr. Dlamini’s research will investigate how disturbances within the basal ganglia are implicated as a common pathway of dystonia. In children with basal ganglia stroke post-stroke, dystonia is one of the commonest movement disorders of childhood, providing a unique window to examine the network differences between children with and without post-stroke dystonia. Dr. Dlamini explains; “The knowledge obtained through this research will improve understanding of ‘why dystonia occurs, when it occurs, and in whom it occurs’, potentially providing paradigm shifting opportunities for the development of future mechanism and individual targeted therapies to impact the quality of life of children, adults, and their communities”. The Discovery Award Grant, supported by DMRF Canada, was awarded through the grant program of the Banting Research Foundation with input from the DMRF Medical and Scientific Advisory Committee. Jan Teller, Chief Scientific Officer at DMRF said of Dlamini’s research; “this is a very original application from an exceptionally well-trained faculty. The proposal is highly relevant to dystonia and DMRF is happy to support it in partnership with the Banting Research Foundation.” Congratulations to Dr. Dlamini and her team at SickKids. We look forward to hearing more on this exciting research in the months to come.
DMRF Canada Invests More Money into Dystonia Research DMRF Canada Launches Clinical and Research Fellowship:
NEW for 2018: DMRF Canada is proud and excited to
For the second year, DMRF Canada is funding a Clinical
announce the first ever Pilot Project Program for Dystonia
Fellowship for Movement Disorders with a specialty in
Research in Canada. The objective of this research is to
dystonia. But this time, we’re doubling our investment so
support an investigator whose research focuses on better
that this is a two-year commitment. This two year Clinical
clinical treatments for patients. This grant will launch in
and Research Fellowship will launch later this fall –
November 2018.
encouraging new young investigators into the field. Visit: www.dystoniacanada.org/research for more information.
If you want to support critical dystonia research, please turn to the back cover and make your donation today!
5
2018 Jackson Mooney Patient Grant Recipient Announced:
Meet Sarah Anderson 6
DMRF Canada, in partnership with Jackson Mooney and his brother Jeff, are thrilled to announce that DMRF Canada selected the 2018 Jackson Mooney Patient Grant recipient. Meet Sarah Anderson, a high school graduate interested in pursuing her teaching degree at the University of Winnipeg. Sarah suffers from generalized dystonia because of oxygen deprivation at birth. When describing her educational goals, Sarah says; “despite the inevitable challenges living with dystonia presents, I was always that typical child who looked to the future with goals such as eventually having a career. For this reason, academic success has been a major focus for me.” A dedicated student, Sarah has been on the Honour Roll for three consecutive years. This year she was named her High School’s Valedictorian. Sarah will be entering University in September 2018, with a goal to become an educator. “Growing up, I was fortunate to have many teachers who not only passed on valuable academic lessons but inspired me through their knowledge and dedication. It is both my goal and my dream to educate and be that role model for the children of tomorrow.” Jackson’s vision when he established the grant, was to make life easier for dystonia patients who were trying to further their education. “I wanted to give someone a real chance to do something exceptional – something that they might not have had an opportunity to do. This grant is aimed at helping in a small way”. This year’s grant valued at $4,500 will be directed to Sarah’s tuition costs. “I have always been a ‘glass is half full’ type of person, but tuition is one challenge that a positive attitude alone can’t overcome. I’m truly grateful to receive this grant as it takes me another step closer to reaching my career goal of becoming a teacher.”
Catching Up with Last Year’s Jackson Mooney Patient Grant Winner Neil Merovitch was the Jackson Mooney Patient Grant Recipient in 2017. We had a chance to catch up with Neil last month and we’re pleased to confirm that Neil is entering the third year of his PhD in Physiology at the University of Toronto. Neil continues to be focused on understanding the mechanisms underlying social memory deficits associated with neurodevelopmental disorders. This past year Neil also won the first-place poster award at the 3rd Zebrafish for Personalized/Precision Medicine Conference. Best of luck, Neil!
7
One of the key learnings from the survey was that dystonia patients continue to suffer from pain. In attempting to help patients determine how to best deal with their pain, DMRF Canada asked Dr. Gordon Ko to provide his theories on how he treats his Cervical Dystonia patients’ pain. Below you will find details on the 4 Component Approach. A reminder that every dystonia patient experience is different. The four-component approach takes into account that there are many different reasons for physical pain. It is DMRF Canada’s policy to provide a variety of ideas and news regarding all types of dystonia, but not to endorse any of the drugs, treatments or methods discussed. DMRF Canada encourages you to consult with your physician about procedures mentioned herein. therapy and treatments included herein.
Treating painful cervical dystonia: The 4 Component Approach By Jasmine B. Ko, Department of Kinesiology, McMaster University Pain in cervical dystonia (CD) was first described years ago* and again in 2017, when the DMRF Canada Survey and subsequent report; Real Patients, Real Responses found in 397 patients across Canada, that the most important aspects of CD were: generalized pain (91%), neck pain (84%), twisting of the neck (77%), fatigue (47%) and headaches (35%).
The most import aspects of cervical dystonia (CD): Generalized pain (91%) Neck pain (84%) Twisting of the neck (77%) Fatigue (47%) Headaches (35%)
The four components of chronic pain:
Structural
Biochemical Neurological
Psycho Emotional
Introducing the Four Components of Chronic Pain by tDr. Gordon Ko: Interventional physiatrist Dr Gordon Ko MD FCFP(EM) FRCPC PhD incorporates a “Four Component approach” to find the “why” behind the pain in his CD patients. Coined originally by German physician Dr. Dietrich Klinghardt; MD, PhD, this approach first identifies the root sources of pain (and CD) and resolves them by using a multimodal, interdisciplinary approach. 8
*Additional research on the relationship between pain and cervical dystonia : Chan J. et.al. Mov Disord. 1991; Jahanshahi M. et.al. Arch Neurol. 1990, Galvez-Jimenez N. et.al. Adv Neurol. 2004.
Structural causes are usually linked to physical trauma
childhood traumas. Evidence-based therapies for PTSD
(such as “whiplash” after a motor vehicle accident) and
include eye movement desensitization retraining (EMDR),
overuse mechanisms (e.g. prolonged head forward posture
emotional freedom technique (EFT) and hypnosis. Neuro
from computer work). Besides imaging studies (x-rays,
therapy utilizes computer-assisted feedback of brainwave
MRI), further definitive testing may include fluoroscopic-
activity combined with visual / auditory input signals to
guided facet joint nerve blocks.
train the brain for improved meditation or concentration. Such approaches work effectively when combined with
Treatment options could include cortisone injections,
psychotherapy (e.g. cognitive-behavioral therapy). More
facet joint radiofrequency denervation, and platelet-rich
information is available with the Association for Applied
plasma prolotherapy injections. Likewise, botulinum toxin
Psychophysiology and biofeedback.
has been shown to have an effect (beyond relaxing muscle) in reducing nociceptive joint pain. Injections work best
Neurological causes include actual changes in peripheral
when combined with physical therapy to strengthen weak
(nerves) and central nervous system function that leads
core muscles and restore functional movement patterns.
to pain perpetuation. This is a phenomenon called
Prior to doing such injections, Dr Ko may seek out other
“central sensitization” demonstrated on functional MRI
treatments – including having his patients first see a
(presently used in research). Medical treatment for this
therapist for a trial of acupuncture, and/or Graston
includes the use of oral medications such as anti-seizure
therapy to release muscle trigger points.
drugs, antidepressants, muscle relaxants, opioids and cannabinoids. Such oral medications are limited by gut,
As president for the Canadian Association of Orthopaedic
liver, renal, cardiovascular side-effects.
Medicine (www.caom.ca) which trains MDs on such injections, Dr Ko recommends that such treatment be
Perhaps the most exciting approach to reduce both
done by properly trained physicians. DMRF Canada
peripheral and central pain sensitization is botulinum
recommends that any investigations into treatment begin
toxin – A (BTX-A). This highly purified natural protein is
with your primary care provider.
extracted from the “botulism” bacteria. The molecule when injected into muscle, is taken up by the nerve, blocking
Biochemical causes that perpetuate chronic pain could
the nerve from releasing its transmitter. This produces a
include poor food choices such including highly processed
temporary but prolonged relaxation of muscle typically
carbohydrates. Other underlying conditions could include
lasting three months. It has also been shown to inhibit the
gut dysbiosis, toxins, and hidden infections (such as
release of pain neurotransmitters such as Substance P,
chronic Lyme disease or viral reactivation syndromes,
CGRP and glutamate.
now termed Multisystemic Infectious Disease syndrome, or MIDS). Often the regular testing that a family MD or
Health Canada has approved Botulinum Toxin-A for
internist will do is negative, but further tests may provide
first-line treatment of CD, of which there are currently
clues. Based on such testing, the next step would involve
available: OnaBTX-A Botox (since 1995), IncoBTX-A
seeing a physician trained in Functional Medicine or
Xeomin (2009) and AboBTX-A Dysport (2016).
International Lyme and Associated Disease Syndromes. For a detailed explanation on how BTX-A works for pain, visit
Psycho-emotional causes of pain include the stress
Dr Ko’s website (under videos) at www.DrKoPRP.com.
from physical and/or emotional traumas (including
For details on how to live well with dystonia, please visit:
post-traumatic stress disorder - PTSD). Many cases
dystoniacanada.org/livingwell. For details on the Dystonia Patient
of intractable pain have predisposing factors such as
Survey and Report, please visit: dystonicanada.org/surveyreport.
9
Meet Dwayne Backer,
DYSTONIA ADVOCATE AND INSPIRATION
This year’s Dystonia Support
where Dwayne attended Laurentian University,
Group of Sudbury and District
graduating with a sociology degree in 1972.
Walk-and-Wheel 2018 event
Because he was unable to control a pen enough to
welcomed 28 walkers, supporters and volunteers - and raised close
write, he taped his professors’ lectures and took his exams orally.
to $20,000 for research and support programs for individuals living with dystonia in
In 1974, Dwayne opened his own Smoke Shop on
Canada. It also marked the 18th year of walking for
Durham Street, which he owned until 1998. Originally
dystonia for Sudbury resident, Dwayne Backer.
Dwayne thought this was a sign for him to retire, but he found that “there wasn’t enough to do, and
For years Dwayne has been walking, supporting the
I wasn’t ready to just stop working, so I applied to
cause and spreading awareness for dystonia. But this
Wal-Mart in April 1999. Dwayne worked for Wal-Mart
year he reached an incredible milestone: With the
for many years, and for years, his colleagues at
help of 286 sponsors who supported his efforts this
Wal-Mart were supporters of his fundraising goals at
year, Dwayne raised over $11,000, bringing his
the annual Walk.
cumulative fundraising total for the past 18 years to over $100,000.00.
As for coping with the pain from his dystonia, Backer said the neurotoxin treatments he receives
“I believe very strongly in raising money to find a
in every four months to relax his muscles have helped
cure for dystonia, which I have had for my entire
somewhat. He said he also appreciates the support
adult life” said Dwayne.
he receives through the dystonia support group and believes in continuing to focus his efforts on
For Dwayne, dystonia has been a reality for as long
fundraising to fund research for a cure.
as he can remember. In 1967, Backer was working in North Bay for the Canadian Air Force when he first
Of his life with dystonia, Dwayne says: “When we
started noticing the symptoms of what was later
were born we don’t come with a warranty or
diagnosed as dystonia. He had a stiff neck which
instruction sheet. The stages of life have to be
became progressively worse until his neck was bent
experienced. Some people glide through all these
down onto his shoulder. His condition became worse
stages, others hit brick walls. We with Dystonia are
and worse until he was unable to move at all.
examples of the obstacles we have to overcome. We lose a lot of our self-confidence and we need
After years and many examinations by different
encouragement to carry on. Courage and hope are
doctors, Dwayne was finally diagnosed with dystonia,
what we must not lose. Belief in something stronger
and underwent experimental brain surgery which,
than my flawed self has certainly helped me….
to some extent, finally succeeded in loosening
‘What I can, I must do’ Is my favourite quote.”
his muscles. On behalf of those of us in the dystonia community, It was during Dwayne’s recovery from surgery in his
we thank Dwayne for his bravery and for not giving
hometown of Mattawa where he met his future wife,
up hope.
Pauline. The couple eventually moved to Sudbury, 10
Working Together to Move Canada for Dystonia Once again, DMRF Canada is leading dystonia awareness efforts throughout the month of September and beyond. There are several ways for you to get involved. Here’s How: Share the Faces of Dystonia Campaign. Everyone experiences dystonia differently. Our thanks to our volunteers who helped put the #facesofdystoniacampaign together. For a complete list of faces, please visit: www.dystoniacanada.org/faces. If you want to submit your ‘face’ for next year, email a photo and a quote to: info@dystoniacanada.org
Promote Dystonia Awareness Through Social Media.
Check Out Local Landmarks.
Throughout the month of September, post, tweet, message, and promote dystonia awareness using
#dystoniamovescanada #dystoniamovesme #dystoniaawareneness
Raise awareness in your Community
Make sure you are following us on Facebook and Instagram for a chance to win one of two Google Home Mini prizes.
This September, we’re lighting up Canada in Blue and White! Visit: dystoniacanada.org/dystoniaawarenessmonth for a complete listing of landmarks.
Encourage local healthcare professionals to display dystonia awareness materials in their waiting rooms. DMRF Canada will provide all the materials required to get the word out. Please contact info@dystoniacanada.org to request your materials today.
Help Shape Dystonia Research DMRF Canada is a proud partner of the Global Dystonia Registry. The goal of the Global Dystonia Registry is to support future dystonia studies, including clinical and research trials, through the collection of data on persons affected by dystonia.
11
12
13