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Dystonia Canada Report A Newsletter from the Dystonia Medical Research Foundation Canada

Spring 2017

CASEY KIDSON IS DYFYING DYSTONIA Learn more about Casey’s Mission Inside.

IN THIS ISSUE • DMRF Announces 2017 Mahlon DeLong Young Investigator Award Project to Focus on X-linked Dystonia-Parkinsonism • Meet our 2017 Dystonia Ambassador, Alicia McGill • Upcoming Events, Educational Sessions, Walks and More

Please consider supporting the dystonia community with a monthly gift. See the back cover for details on how you can make a difference or visit Thank you for your support.

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 wellbeing of affected individuals and families. DMRF Canada works in partnership with the Dystonia Medical Research Foundation in the United States to ensure funding of the best and most relevant dystonia medical research worldwide through partnerships with the Canadian Institute of Health Research (CIHR) and other like-minded research organizations. BOARD OF DIRECTORS President Samuel Belzberg Vice President Frances Belzberg Secretary/Treasurer Pearl E. Schusheim

Foundation Update Dear Friends, You are critically important to DMRF Canada. The Foundation is supported by dedicated and generous individuals who believe a cure for dystonia is possible. Not just possible, but inevitable, if we work hard enough and smart enough. This year we have important plans and we hope you’ll continue to join us on this journey. From launching a new research partnership with the Banting Foundation, to investing in new and exciting dystonia research, not only in Canada, but all over the world, to launching new events in different communities, our objective is to continue to do more for the dystonia community. The status quo is simply not good enough. Each of you has something to contribute to our success. The DMRF’s impact on dystonia research progress and service to the patient community is possible thanks to you. Whether you give financially, promote awareness, participate in social media and help to bring awareness to our cause, or offer your friendship and compassion to others affected by dystonia, you have a role to play in getting us closer to a cure. I want you to know that we are making every effort to cultivate new medical discoveries that improve lives. We are working every day to bring new dystonia patients, caregivers and friends into our network to provide support, information and hope. We simply couldn’t do what we do without you. We continue to make great progress towards our mission – thank you for being such an important part of it. Sincerely,


Stefanie Ince, Executive Director

Heather Connor Lil Faider Dennis Kessler Rosalie Lewis Bill Saundercook Connie Zalmanowitz

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.

Scientific Advisor Mahlon DeLong, MD


Canadian donations should be sent to: Dystonia Medical Research Foundation Canada 305 – 121 Richmond Street West, Suite 305 Toronto ON M5H 2K1

DMRF-Funded Discoveries Reveal Unexpected Drug Effects and Clarify Neurocircuitry Underlying Dystonia Several recent science publications describe exciting discoveries made by a research team in Germany led by DMRFfunded investigator Professor Angelika Richter, DVM, Director of Institute of Pharmacology, Pharmacy, and Toxicology at the University of Leipzig. Professor Richter and her collaborators have explored new GABA drug candidates in a dystonic hamster model. Novel drug candidates were provided by BioCrea GmbH and Merz Pharmaceuticals. The drugs did not work as expected, but the research team may have discovered

an unknown mechanism of action of these drugs. It appears they act through very precise interactions with specific subunits of GABA receptors. GABA receptors respond to the neurotransmitter gammaaminobutyric acid (GABA), an important messenger chemical of the central nervous system. Professor Richter and her team have also developed a new motor-behavioral test in DYT1 mice created by William Dauer, MD—also with DMRF funding—that demonstrates sensorimotor abnormalities in these mice. These findings represent important progress in drug candidate exploration

and in defining the neurological circuits and molecular mechanisms underlying dystonia, all of which are needed for progress toward new therapies. *Reprinted with permission from DMRF Dystonia Dialogue, Spring 2017, Volume 40, Number 1

DMRF Canada Partners with the Banting Foundation to deliver another funding opportunity to young investigators In January 2017, DMRF Canada announced a new partnership with The Banting Research Foundation to support research by early career investigators focused on areas relevant to dystonia. The Banting Research Foundation Discovery Award supported by DMRF Canada is a one-year grant of up to $25,000 per year that will support research related to the causes, mechanisms, prevention, and treatments which could potentially enable medical breakthroughs and transformative health care advances to find a cure for dystonia. The Banting Research Foundation Discovery Award supported by DMRF Canada will be awarded through the grant program of the Banting Research Foundation with input from the DMRF Medical Advisory Committee. For additional details please visit:

IN TRIBUTE: DMRF Canada extends our condolences and gratefully acknowledges the generous gifts received in memory of the following. Loreto Caschera Laurine Cowie Judy Kerr

Stephen Lawson Catherine MacDougall Patricia Plewman

William Orlowski Shirley O’Neil

Mary Higdon: Mary Higdon was an integral part of the Ottawa Support Group community. She was always there with a helping hand and was instrumental in the organization of the annual Parliament Hill Walk-and-Wheels. Mary is missed by all.


Dyfying Dystonia MEET CASEY KIDSON, A DYSTONIA WARRIOR. CASEY’S GOAL IS TO RAISE AWARENESS AND FIND A CURE FOR DYSTONIA DMRF Canada sat down with Casey to learn more about her dystonia, and her 2017 Dyfying Dystonia campaign:

experiencing all the involuntary muscle twitching and contractions for so many years.

DMRF Canada: When were you diagnosed with dystonia, and what type of dystonia do you have?

DMRF Canada: What made you decide to set up your 2017 Dyfying Dystonia campaign?

CK: I was diagnosed with Dystonia in 2003 CK: “Purpose is the reason you journey. at the age of 15. The form of dystonia that Passion is the fire that lights the way” I have is Myoclonus Dystonia. -Author Unknown. When I reflect back to a year and a half ago when I first laced up DMRF Canada: How long did it take to my running shoes for the Limestone Mile, get your diagnosis? a 1 mile Canada Day race here in Kingston, Ontario, I would have never imagined that CK: Very subtle symptoms began around road twisting and turning to bring me to the age of 3 after a high fever. The where I am today. symptoms continued to slowly progress until around age 15, I was referred to a My goal was simple, to finish that race. In neurologist in 2002 when I was 14 years my mind it was just a straight road with a old. After numerous tests including MRI’s, start line and a finish line. However, I was EEG’s and consultations with various other very wrong about the straight road, as neurologists it was confirmed that I had my journey continued and my passion for Myoclonus Dystonia. running grew to new heights, I knew that I no longer wanted to just run to finish DMRF Canada: How did you feel when the race, or train to just train. I wanted you were first diagnosed? to run, train, and race for a purpose, a purpose that not only impacted myself CK: My diagnosis came following a but everyone else around me. That was large conference-like meeting with the moment I decided I was going to approximately 10 specialists and allow my passion for running light the way neurologists, during which I was asked on my journey to spread awareness and various questions and required to support for DMRF Canada. I came up with perform certain activities such as writing, the campaign title ‘Dyfying Dystonia’ from walking, and exercises that challenged Idina Menzel’s song Defying Gravity, the my balance and fine and gross motor lyrics really hit home for me: “ I’m through abilities. Receiving the diagnosis was accepting limits ‘cause someone says rather challenging. Questions buzzed they’re so. Some things I cannot change through my mind “Is there a cure?”, “Will but ‘til I try, I’ll never know!”. Embracing it get worse?”, “What will I tell people?”, and accepting my capabilities and “Will it stop me from engaging in certain challenges to push through barriers to activities?” - so many questions that I discover how far I can actually go, because didn’t know the answers to. Although, until I try I will never know. as challenging as it was to receive the diagnosis, it also came as a relief to finally have an answer to why I had been


“I came up with the campaign title ‘Dyfying Dystonia’ from Idina Menzel’s song “Defying Gravity”; the lyrics really hit home for me. “I’m through accepting limits ‘cause somebody says they’re so. Some things / I cannot change but ‘til I try I’ll never know!”

Dyfying Dystonia’s Casey Kidson with DMRF Canada Executive Director, Stefanie Ince

Casey Kidson was diagnosed with dystonia in 2003. Since that time, she has been dedicated to not letting Dystonia win. In an effort to raise more awareness of the disorder, and more funds for the cure, Casey has donated her entire 2017 running season, comprised of over 25 runs so far, this year, to Dyfying Dystonia. The DMRF Canada has set up a fundraising page so if you’d like to help Casey on her journey, you can do so by visiting: DMRF Canada: What do you hope to achieve with this campaign? CK: With my Dyfying Dystonia campaign I hope to spread awareness and raise support everywhere I go. My goal is to raise funds to support dystonia awareness and education initiatives and spread awareness for DMRF Canada and their goals of advancing research to find a cure. Lastly, I hope that my campaign will bring the dystonia community closer together. We are in this journey together, we are strong and together we can ‘Dyfy Dystonia’. Merz Pharma Canada is proud to support Casey Kidson’s Dyfying Dystonia campaign through their ongoing relationship with the DMRF Canada.

DMRF Canada: How can others in the dystonia community get involved and help to support you in your effort to raise awareness of dystonia? CK: The dystonia community can get involved and assist in supporting my efforts to raise awareness for dystonia by following my Facebook page (see: www.dystoniacanada. org/casey) By sharing my pages and posts it will play a very helpful role in spreading awareness. You can also join me at any of my upcoming races, I would love to meet you and I think it would be amazing to have support from members of the dystonia community at the various races.

Connect with others in your community: Visit for a list of DMRF Canada Support Groups available throughout the country. Visit us on Facebook:


2017 Mahlon DeLong Young Investigator Award to Focus on X-linked Dystonia-Parkinsonism The DMRF has announced the recipient of the Mahlon DeLong Young Investigator Award. Aloysius Domingo, MD, PhD, a postdoctoral research fellow at Massachusetts General Hospital earned the $55,000 USD award for a project entitled, “Deriving Signatures in X-linked Dystonia-Parkinsonism through Integrative Genomic Studies.” X-linked dystonia-parkinsonism (XDP) is a degenerative neurological movement disorder characterized by symptoms of dystonia in combination with symptoms of parkinsonism (tremors, bradykinesia, rigidity, balance instability, shuffling gait). It is believed to be caused by DNA changes in the TAF1 gene. XDP affects Filipino men almost exclusively. Women may be carriers but rarely become symptomatic. Only about 500 patients have been documented, and experts believe XDP is under-reported. “As a Filipino researcher in the US, the search for the genetic underpinnings and definitive disease mechanism of XDP is not like any scientific endeavor for me,” says Dr. Domingo. “It represents a personal desire to help my countrymen by removing frustrating barriers that prevent the development of therapy for this rare genetic condition. The award from the DMRF is a step towards this goal, not merely by support through funds, but hopefully also by generating awareness and directing attention to this orphan disorder.” The goal of Dr. Domingo’s project is to clarify the genetic architecture of XDP and begin to understand the brain pathways and networks that become abnormal as a consequence of the causative mutation. Improved treatment options are urgently needed, and the disease mechanisms in XDP may harbor clues into the 6

mechanisms of other forms of dystonia and parkinsonism.

and clinicians in the dystonia field. To honor Dr. DeLong’s lifetime achievements and service, the DMRF established The “Dr. Domingo is already well-known for his Mahlon DeLong Young Investigator Award award-wining genetic and clinical studies to support an early career PhD or MD on XDP and other movement disorders,” researcher pursuing ambitious research in says Jan Teller, PhD, Chief Scientific dystonia. Officer with DMRF. “He is exceptionally well-trained and prepared to carry out this work having received an MD degree in the Philippines and a recent PhD in Neurogenetics from the University of Lübeck in Germany. We hope that his long-term commitment to studying this form of dystonia will result in numerous breakthrough discoveries.”

“The award from the DMRF is a step towards this goal, not merely by support through funds, but hopefully also by generating awareness and directing attention to this orphan disorder.” The namesake of the award is DMRF Scientific Director Mahlon DeLong, MD, neurologist and professor at Emory University School of Medicine in Atlanta. His research has advanced the understanding and treatment of Parkinson’s disease, dystonia, tremor, and other neurological movement disorders. His pioneering discoveries contributed greatly to the resurgence of functional stereotaxic brain surgery, which has transformed the lives of thousands of patients affected by these debilitating disorders. His longtime leadership as Scientific Director at the DMRF transformed the Foundation’s science program and inspired many investigators

Dr. Aloysius Domingo is studying the genetic origins of XDP, a rare inherited movement disorder.

Are you interested in funding research like this? Consider investing in the Dystonia Medical Research Foundation Canada. Visit: or see the back page of this newsletter to make your donation.

Meet our 2017 Ambassador – Alicia McGill Join our Special Ambassador, Alicia McGill, along with ex NHL hockey player Rem Murray, and hundreds of others in the dystonia community for the Annual Chuck’s Run, taking place in Toronto on Sunday, June 4, 2017. Chuck’s 5km Run, Walk and Wheel for Dystonia aims to raise awareness and funds for research in honor of Chuck Saundercook. “I support the DMRF Canada because when I had no one else to turn to, they were there to provide support and guidance. That assistance made such a difference when I was struggling with my diagnosis. Canadians need to help the DMRF to raise awareness and funds for research and so I recognize how important it is to help the DMRF Canada in any way I can.” - Alicia McGill Alicia McGill (middle) with her two bosses, Stephen Massel (left) and Gerry Martin (right)

Read Alicia’s story at:

Thank you to our: Platinum Sponsor Merz Pharma Canada Ltd.

You can register, or donate to Chuck’s Run by visiting:

Gold Sponsor Ipsen Biopharmaceuticals Canada Inc. 7

JOIN US! DMRF Canada Upcoming Events EVENT


Winnipeg Support Group Meeting

St. Boniface General Hospital

Winnipeg, MB

April 8, 2017

Ottawa Support Group Meeting

McDonalds at Billings Bridge Plaza

Ottawa, ON

April 11, 2017

Toronto Support Group Meeting - Versatile Accessibility Presentation

32 Kern Road

North York, ON

April 22, 2017

Montreal Scotiabank 5k Walk/Run

Parc Jean Drapeau

Montreal, QC

April 22, 2017

Edmonton Yogatonia

Prana Yoga Studio, 5611 199 St.

Edmonton, AB

April 24, 2017

Hamilton Support Group Meeting

St. Peter’s Hospital

Hamilton, ON

May 6, 2017

Golden Triangle Support Group Meeting

Senioren Haus, Common Room, 483 Ottawa St.

Kitchener, ON

May 7, 2017

Edmonton Yogatonia

Prana Yoga Studio, 5611 199 St.

Edmonton, AB

May 22, 2017

Toronto Support Group Meeting – Cognitive Behavioural Therapy

32 Kern Road

North York, ON

May 26, 2017

Golden Triangle Freedom to Move Walk/ Wheel

Victoria Park, 80 Schneider Ave

Kitchener, ON

June 3, 2017

Chuck’s 5 KM Walk/Run/Wheel for Dystonia High Park

Toronto, ON

June 4, 2017

Winnipeg Support Group Meeting

St. Boniface General Hospital

Winnipeg, MB

June 10, 2017

Hamilton Freedom to Move Walk/Wheel

Battlefield Park

Stoney Creek, ON

June 10, 2017

Sudbury Freedom to Move Walk/Wheel

Howard Armstrong Recreation Centre, 4040 Elmview Dr.

Hanmer, ON

June 11. 2017

Kelowna/Okanagan Support Group Meeting

Perkins, 2170 Harvey Avenue

Kelowna, BC

June 21, 2017

Toronto Support Group Meeting – TPH Nutrition Session I

32 Kern Road

North York, ON

June 24, 2017

Vancouver Scotiabank 5k Walk/Run

Stanley Park

Vancouver, BC

June 25, 2017

Toronto Support Group Meeting – Brain Health Seminar

32 Kern Road

North York, ON

July 22, 2017

Kelowna/Okanagan Support Group Meeting

Ben Lee Park, 900 Houghton Road

Kelowna, BC

August 11, 2017

Toronto Support Group Meeting – TPH Nutrition Session II

32 Kern Road

North York, ON

August 26, 2017

Hamilton Support Group Meeting

88 Maplewood Ave

Hamilton, ON

September 16, 2017

2nd Annual Dystonia Zoo Walk

Toronto Zoo

Toronto, ON

September 24, 2017

Dystonie Partage – Montreal Support Group Meeting

Hotel Sandman, 999, de sérigny

Montreal, QC

September 30, 2017




Research: DMRF Canada supports research projects while acting as a catalyst to grow the field of dystonia research. We partner with the DMRF in addressing the most pressing unresolved questions in dystonia by working with researchers and collaborators from all over the world. DMRF has supported 500+ research investigations related to the causes, mechanisms, prevention, and treatment of all forms of dystonia. Community and Support: DMRF Canada reduces social isolation of patients and families by offering peer-to-peer support programs that help patients and families connect with one another. The Foundation supports the development and ongoing promotion of all local dystonia Support Groups throughout the country. We are continually looking for ways to support new groups. If you’re in a location that doesn’t yet have a Support Group, we would love to help you get started. Email us today: Awareness and Education: DMRF Canada offers awareness and education programs to improve timely diagnosis, improve societal understanding of dystonia, and further the Foundation’s mission. Visit www. for more information. Advocacy: DMRF Canada works to improve quality of life of those affected by dystonia by educating elected officials on dystonia and the needs of the dystonia community. Working with Neurological Health Charities Canada, the DMRF Canada is one of over 15 neurological charities working to advocate the Canadian Government to support an action plan for the brain. Find out more at: advocacy Partnerships: Whenever possible, the DMRF partners with pharmaceutical partners, local healthcare providers, and government agencies to support the dystonia community. This includes organizing educational sessions in local communities, providing support at events and symposiums, and the development of patient materials. We also work with other patient groups to offer support services when possible. *Reprinted with permission from DMRF Dystonia Dialogue, Spring 2017 Vol 40, No. 1.

For 40+ years, we have been of service to the dystonia community by:


• Providing global leadership on matters critical to dystonia • Advancing medical research toward improved therapies and a cure • Promoting greater awareness of dystonia • Educating patients and families • Providing support resources for patients and families


Give a Gift Through the Year For a small organization like the DMRF Canada, donation revenue often fluctuates dramatically from month to month, and year to year. Monthly giving, however, offers a steady and predictable source of funding, and allows the Foundation to benefit from other advantages. Here are some reasons to give monthly. • Less expensive. There’s typically a significant cost advantage for all but the largest gifts when donors choose to give online instead of mailing or phoning in their donation because manual administrative work is eliminated. And in the case of monthly donations, the cost advantage is more significant as the charity can reduce its marketing efforts due to our confidence in the continued support of our monthly donors. • Streamlined administration. When using monthly gifting, the Foundation benefits from prompt donation disbursement, instant tax receipting (at year end), and easy access to donation data. • More effective planning. With a more predictable cash flow, the Foundation is able to remain focused on fulfilling our mission. We have a better ability to plan future research initiatives without worrying if enough funds will come in to carry out the charitable efforts.

Monthly Donor Testimonial: Angie from Edmonton, AB “I am so grateful this year to donate a small monthly fee to support Dystonia, a word that many people have never heard of. In January 2017 I had surgery to remove a cancer cell from one of my lungs. As I was in the hospital for 6 days I had a medical team that included about 40 people from surgeons, doctors, nurses, interns and med students working on me yet only 1 person from that entire medical team knew what Dystonia was. I say the words I have Lung Cancer and everyone becomes so compassionate; “what can I do to help, I am so sorry…” yet when I say the word Dystonia, I get a blank stare, not many know what it is, what it looks like or what it feels like. Having lung cancer really was a walk in the park compared to living with Dystonia. It all starts with me, giving what I can, doing what I can so that someday Dystonia will be a word everyone knows and researchers get the much needed funding to find a cure.” Monthly donor Angie from Edmonton


“I support Dystonia research because this condition has touched my family directly. My sister developed secondary dystonia when she was 16 years old. At 11 years of age, she was hit by a car and because of the concussion she incurred she developed dystonia. I find it easy to make an ongoing monthly donation. The small amount of cash is not missed monthly but adds up to a sizeable yearly donation.” Christine DMRF Canada Monthly Donor “I really appreciate the fact that I can spread my donation out over the year, and give a bit more than I might with a single donation, and that I don’t have to remember to donate each year as it continues on year to year. For DMRF it provides a steady and reliable source of funds for research and support for people with dystonia which also benefits me as one of those people.” Victoria BC, DMRF Canada Monthly Donor

Going the Extra Mile HAMILTON SUPPORT GROUP LEADER LAURIE BELL IS OFFICIALLY STEPPING DOWN AS THE LEADER OF THE HAMILTON SUPPORT GROUP. HERE IS LAURIE’S STORY. I was diagnosed in 1989. At that time, I was 36 years old, working full time with two sons (ages eleven and nine). I had a great job that was physically taxing but making better money than I had ever expected to. I was not a college graduate. I made good wages, had benefits and a pension plan…good stuff for a working Mom.

At the time, there was a fledgling Dystonia Foundation that was heavy on the workload and very light on information. We had no way of connecting with others, no way to learn more about the ways my life would change. I only had my sister and her experience to draw on.

In 1993 I had surgery in Montreal, called selective denervation. Selective I had ear aches, jaw aches, head aches. I denervation surgery involves severing the had been seeing a chiropractor, but he nerve that carries the incorrect messages could do nothing about the neck pain. I between the affected muscle and the always carried Extra Strength Tylenol in my brain. It did not straighten my neck, but purse. I went to specialists and pestered released my right sternocleidomastoid my dentist, but to no avail. muscle (SCM) from its spasm, thus loosing all neck support on the right side. I did I was at a wedding in September of that gain flexion and have had no migraines year, and I was keeping an ice pack on my since this procedure. neck by this time. My sister, who was a The change in my neck posture caused my Maid of Honour at the wedding, advised body to bend extremely, to compensate me to see her neurologist. My sister had for the crooked world my eyes saw, and been living with generalized dystonia after years of walking /standing bent to since she was 5 years old. Fortunately, she the left, I developed a severe scoliosis knew the symptoms. (abnormal curvature of the spine). I began a physiotherapy regimen in 2006. So, I went to the neurologist, who, after a quick physical exam in her office, Anyone can manifest dystonic symptoms, diagnosed me with Cervical Dystonia. I any race, any age or gender. The condition took the medication she prescribed and does not discriminate. My Neurologist she said I’d be back to work in six weeks. now diagnoses me as having segmental Six week later I was in a wheel chair, so dystonia, as my facial spasms and hand I stopped taking the pills and went to a tremor are involved. There are several different neurologist. By this time, I was treatments available. Sadly, none of these grappling with debilitating migraines and treatments are cures. a neck that was frozen in place. I could not drive. For over twenty years, the Foundation has watched Laurie put her heart and soul into working with the dystonia community in Hamilton. She has been an inspiration to hundreds of people. She was a dynamic support group leader and has led many patient programs, events and activities. She always has a smile on her face and welcomes the group with genuine caring. On behalf of the DMRF Canada, we wish Laurie congratulations on many years of wonderful work. Do you want to share your dystonia story? Email: and your story could be featured in an upcoming newsletter.

Laurie Bell led the Hamilton Support Group for almost 20 years.

I personally use a few pharmaceuticals – but nothing with codeine since I began my physiotherapy routine. My pain levels are much lower, and my body strength has vastly improved. My mobility continues a downhill slide, for which we have no practical answer. It could be postural; it is NOT dystonic. It is a severe and constant worry. I use a lot of yoga. I modify my postures and thankfully my instructor is good with that. My physiotherapy routine includes resistance training, balance work, weight lifting, and core strengthening. Hamstring stretches, hip flexor stretches, some manual neck stretches and massage are also part of my routine. Stress and fatigue are definite factors in the symptoms gaining severity. This is one thing that all dystonia patients I have met have in common. That, and a dream of a cure. Laurie Bell

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DMRF Canada 121 Richmond Street West Suite 305 Toronto, ON M5H 2K1

Yes, I want to continue to support the DMRF Canada Yes, I want to learn more about how to include DMRF Canada in my Will. Yes, I want to join the DMRF Canada Monthly Giving Team. Monthly giving offers you a way to support our programs and services throughout the year. Join a group of dedicated individuals, who are committed to long-term improvements in the lives of individuals suffering from dystonia. $50 a month

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DMRF Canada Spring 2017 Newsletter  

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