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

Spring 2016

MEET JESSE ARRIGO The DMRF Canada 2016 Special Ambassador

In This Issue • DMRF Canada and CIHR Research Update • Join the Global Dystonia Registry • Research Progress: Then & Now Thank you for your support! Read Jesse’s Story on Page 4


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. 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 and partners with the Canadian Institute of Health Research (CIHR) in funding excellent dystonia research in Canada.

Board of Directors President Samuel Belzberg Vice President Frances Belzberg Secretary/Treasurer Pearl E. Schusheim

Foundation Update We are already well into 2016, and I’m happy to report that we have a lot of new activities, events and promotions since our last newsletter. We’ve received a generous grant from The Mark Mercier Foundation, who has generously agreed to fund educational programs and events benefiting DMRF Canada Support Groups across the country. Look out for news on exciting new events and activities coming to your community in upcoming e-newsletters and online at: www.dystoniacanada.org. As well, the Allergan International Foundation has also agreed to help us to develop and distribute new brochures through all movement disorder clinics across the country in an effort to reach out to more people affected with dystonia to make sure they are getting the help they need.

Thank you to all of our very dedicated donors who continue to support our efforts, and to the hundreds of volunteers who have dedicated their time, passion and support in any number of areas - from helping and supporting individuals who have just been diagnosed with dystonia, to organizing events and corresponding with other individuals who are suffering from dystonia, your dedication is appreciated. 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,

We have also recently partnered with the Global Dystonia Registry – please see the article enclosed on how you can register your name and help to build a database of dystonia patients worldwide.

Directors Heather Connor Lil Faider Dennis Kessler Rosalie Lewis Bill Saundercook Connie Zalmanowitz Scientific Advisor Mahlon DeLong, MD

Canadian donations should be sent to: Dystonia Medical Research Foundation Canada 121 Richmond St. W. Suite 305 Toronto, ON M5H 2K1 Contact us at 416-488-6974 or Toll Free: 1-800-361-8061 Email: info@dystoniacanada.org 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.


Where We Put Our Soul

Founders Sam & Fran Beltzberg Remain at Centre of the DMRF*

In 1974, Sam and Fran Belzberg learned dystonia, a neurological movement disorder, could explain their 22-year-old daughter Cheri’s deteriorated handwriting, awkward gait, and labored speech. Like many others before and since, they had never heard of dystonia. The relief of a diagnosis was quickly eclipsed by the glaring absence of patient resources. There was no pamphlet to read or support group to join. Even more troubling, there were neither clear treatment guidelines nor significant research being conducted. Few neurologists knew how to diagnosis or treat the condition. Sam & Fran Beltzberg

The Belzbergs founded the DMRF in 1976 in partnership with Dr. John H. Menkes, the first Scientific Director. The goals were straightforward: encourage investigators to study dystonia and provide information and support for patients. From the beginning, the DMRF embraced a global vision—the Belzbergs were committed to building the relationships and collaborations needed to fulfill the mission, no matter where on earth it might lead. “We dreamed that we’d find a cure a lot sooner. We had no idea 40 years later we’d still be at it,” explains Sam. “We had no idea how many types of dystonia there were, no idea how complex the problems were. Our daughter still has the disease. She really hasn’t been helped by the treatment available. Seeing the problems, she has every day is incentive to keep working.” Cheri became a gifted fashion designer. She has an advanced degree in education and is married

with children and grandchildren. The effects of dystonia remain profound—she uses an electric scooter for mobility and has used assistive devices to aid speech. While they wait for the research to yield new treatments to help their daughter, the Belzbergs are proud of the medical advancements made possible by the DMRF and the growing international scope of the centers and labs committed to dystonia. They marvel at how the membership has grown and how many lives the organization has touched. Sam is quick to credit the success of the DMRF to the caliber of people involved at every level of the organization: “The work we’ve all done together is amazing. The Directors have been fantastic. The staff is first class and so committed. The people of the DMRF work day and night.” “Each Scientific Director has been phenomenal in the loyalty and the inventiveness they brought to

the organization,” adds Fran. “We’ve been very lucky.” Despite the years, the organization remains a deeply personal part of Sam and Fran’s lives. “Where we put our money, we put our soul,” explains Fran. “We want to know what the organization is doing and how they are doing it. We will always be involved.” “You always wish you could do more,” says Sam. “We’re proud to still be actively involved with the DMRF and proud to have so many people to help us.” *Reprinted with permission from DMRF Dystonia Dialogue, Spring 2016 Vol 39, No. 1.

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You Can Help Shape Dystonia Research

The DMRF Canada is thrilled to announce that we have officially become a 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. Although the focal dystonias have many different manifestations, most experts believe they share a common pathogenesis or mechanism that causes the disorder. The common causes may be a similar gene defect, similar lifetime experiences, or both. Collecting information from different patient populations may help us identify the common features that they may share. Register today - and help to guide future dystonia research. Your responses will help us better understand the dystonia experience and help guide future directions in research. Please know your responses will remain confidential. Your participation is completely voluntary and the parameters of each study will be defined for you should you decide to be involved. We hope you will register today. Visit: http://www.globaldystoniaregistry.org/

A Twisted Fate - Two Years Later It has been two years since Brenda Currey Lewis’s book, A Twisted Fate was published. If you haven’t yet had the chance, Brenda’s heartfelt biography about her dystonia is a must read. As many of you know, dystonia is a little-known, debilitating condition. A Twisted Fate is yet another change to educate people about the pain and confusion that comes with a dystonia diagnosis. Brenda’s quirky sense of humour makes this candid account of life with dystonia a thought-provoking and an entertaining read.

In Tribute

To read more about Brenda or order her book visit: www.amazon.ca - Please read it and share it with your dystonia commuity.

DMRF Canada extends our condolences and gratefully acknowledges the generous gifts received in memory of the following:

Connect with Others in your Community:

Jennie Doucett David S. Hodgson Jean McAvoy Johanna Van Mechelen Betty Danowski Judith Walker Julius Ziman

Visit www.dystoniacanada.org/support for a list of DMRF Canada Support Groups available throughout the country. Visit us on Facebook: https://www.facebook.com/DMRFC


DMRF Canada and CIHR Funded Research Update Assessment of sensorimotor integration pathways during an illusory multi-sensory perception By: Dr Reina Isayama: MSc candidate at University of Toronto, Toronto Western Hospital / Krembil Research Institute

The rubber hand illusion has been tested in several neurological and psychiatric disorders. In individuals with focal hand dystonia, the rubber hand illusion was reported to be reduced. However, the reasons for the diminished rubber hand illusion in focal hand dystonia remains unclear and how the rubber hand illusion changes the brain physiology is still not fully understood. My study, generously supported by DMRF Canada and CIHR, focused on the modulation of the interaction between sensory and motor cortices (the main brain areas responsible for sensory and motor functions) during the rubber hand illusion because the reduced rubber hand illusion in focal hand dystonia may be related to the motor symptoms of dystonia. I tested more than 30 healthy individuals using transcranial magnetic stimulation (TMS), which is a non-invasive way to stimulate

a focal part of the brain through the scalp, and recorded responses from hand muscles before and immediately after the rubber hand illusion. I found that the functional connections between the sensory and motor cortices are reduced after the rubber hand illusion. The rubber hand illusion set-up

In psychology research, illusions are often used to examine how sensory information is processed in the human brain. More than 15 years ago, researchers reported a very intriguing illusory experience in which participants were convinced that an artificial rubber hand belongs to their body. In the experiment, healthy individuals viewed a rubber hand being touched while their unseen own hand was synchronously being touched. The participants experienced an illusory feeling of ownership of the rubber hand and perceived the location of their unseen own hand shifted towards the rubber hand owing to integration of sensory inputs from vision, touch, and position sense in the brain.

ARTICLE AT A GLANCE • The DMRF Canada is committed to funding dystonia research through the DMRF in the U.S. and through CIHR.

• CIHR is Canada’s federal I propose that funding agency for health this flexibility research. Composed of 13 of sensoryInstitutes, CIHR provides motor leadership and support to interactions more than 13,700 health may be compromised researchers and trainees in focal hand across Canada.

dystonia, leading to reduction of the illusion. This finding was presented at several international conferences including the International Congress of Clinical Neurophysiology, the Society for Neuroscience annual meeting and the International Parkinson and Movement Disorder Congress.

• In 2012, DMRF Canada and CIHR partnered to support Dr. Isayama’s research over a three-year term.

• Stay tuned for additional updates on this research project, as well as other funding projects that will We are now examining the interaction between sensory and motor cortices be launched in the coming in people with focal hand dystonia months. using TMS during writing preparation. We are very excited about this project because we believe that our findings will further our understanding of the pathophysiology of dystonia and help to design neuromodulation therapies using TMS and other types of the brain stimulation for people suffering focal hand dystonia. I would like to thank CIHR and DMRF again for giving me this opportunity to perform these projects. I will continue my research in movement disorders such as dystonia and am looking forward to contributing further to the field.

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

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Introducing DMRF Canada 2016 By: Bob Arrigo, Jesse’s Grandfather

Each year, the DMRF Canada selects an individual to be represented at the 2016 Chuck’s Run 5 km Walk/Run Event, held at High Park in Toronto. Chuck’s Run is in honor of Chuck Saundercook, who was diagnosed in 1972 with generalized dystonia at the age of 12. In 1979 Chuck became one of the first Canadians to receive deep brain stimulation. He improved with the procedure but developed pneumonia Jesse Arrigo, this years DMRF Canada Ambassador

I am writing this story from my perspective as a grandfather. I currently have three grandsons and the one I write about today is about to turn five years old. His story though has deep roots that seem to dig back through several decades. You see when I was a boy my family lived next door to the Saundercook family. We shared a semi-detached home separated only by a thin centre wall. We lived almost like one big family. An open gate through our back yards and our front doors always open to each other. The Saundercooks were a family of nine children. One of them was different from the rest. His name was Chuck. At an early age Chuck developed a condition called Dystonia. Back then none of us had heard the term before. As the years passed we all helplessly watched dystonia take a progressively greater hold on him. As I approached young adulthood, fell in love and got married, I have a wonderful memory of my new bride and I on each side of Chuck in his wheelchair, him giving us his thumbs up. It was Chuck’s way of giving the big okay to our union. Shortly thereafter - at age sixteen, pneumonia finally took Chuck’s life – due to his weakened state as a result of his dystonia.

As the years passed my wife and I brought three children into the world. As a young adult our eldest daughter Kristin had a cancer scare and had to have half of her cervix removed. She wrestled with the fact that chances of her ever conceiving a child of her own were slim to none. But a day eventually came, much to her surprise and ours that she conceived. It was like a miracle in the making. Nine months later Kristin bore a son. She named him Jesse, which means “Gift of God.”

Bob and Bonnie Arrigo, with Chuck Saundercook

Jesse was a very advanced child through all stages of his infancy and due to Kristin’s difficult pregnancy Jesse was developmentally tested several times for his physical and cognitive status and he scored at the 97%+ level. This was a child who shocked us every week with how fast he was learning. At eight months old after crawling for a couple of weeks, he stood to his feet. At nine months he walked from couch to table to ottoman, and at ten months he let go of everything that could hold him back and set out to discover the world. On May 17th, 2011 in a momentary lapse of our attention Jesse discovered the swirling colours beneath the waters of our Koi pond and instantly found himself fighting for his life. Drowning is a silent death. It isn’t an experience full of screaming and shouting for help. An infant’s lungs will fill with water in 30 seconds and silence any call for help. Even with an adult drowning, arms are not waving in the air as depicted in the movies, they are below the surface pushing down on the water in a futile and desperate attempt to find air above the surface. Within a moment Kristin pulled Jesse from the water and began CPR on his lifeless body. Jesse was in full respiratory arrest. Paramedics arrived and continued CPR for 45 minutes before transporting him to emergency where hospital staff continued CPR and multiple medications for fifty-five minutes. It would be four more hours and the survival of two cardiac arrests until he would be stable enough to transport him to Toronto’s Sick Kids Hospital. The prognosis was his 4


Special Ambassador: Jesse Arrigo and in his weakened state died at age 16. In his final chapter, Chuck donated his body and brain to help others in furthering dystonia research. We are pleased to introduce Jesse Arrigo, a very special boy, and an inspiring Special Ambassador.

certain passing before morning. Jesse miraculously survived the night and has survived every life threat since including double pneumonia. In our weeks at Sick Kids Hospital we learned that due to Jesse’s anoxic injury (a deprivation of oxygen to the brain) he had developed dystonia; how our minds flashed back to Chuck in those days and in many days since. A traumatic brain injury such as a blow to the head or an accident can effect a part of the brain, but a non-traumatic anoxic injury is a “blanket” injury that effects the entire brain. We were told that when millions of brain cells have died and become nothing more than scar tissue there is no known way to restore what was lost. We grew accustomed to hearing about Jesse’s inevitable “constant vegetative state.” But due to our faith in God, our great love for Jesse and his undeniable incredible will to live, our family learned to travel way outside the box of traditional therapy for help. Along the way we have learned that the brain like all other organs and muscles in the human body grows by use. We have now logged thousands of hours exposing Jesse to visual, auditory and tactile stimulation and many more thousands in dollars to “wake up” dormant brain cells in an effort to rebuild what was lost. It has been four years since Jesse’s accident and his jaw dropping progress has taken many in the medical community by surprise. He still cannot walk although his is learning to crawl. He cannot talk, at least in a language that you could understand, but our family is well aware of what he is expressing in the few simple words he has learned and through his own developed communication skills. And now - three generations later- the Arrigo and Saundercook families have been reunited once again by our mutual love for each other and a common adversary. Though we feel Jesse’s full purpose has yet to be realized, it has fallen now to Jesse, the possibility to contribute one more piece to this puzzle. Though much has been overcome in his five short years, his biggest challenge remains, and it’s called Dystonia. To learn more about Jesse’s story and how you can help the Arrigo Family please visit: www.jessearrigo.com

Chuck’s Run 2016 Join our Special Ambassador, Jess Arrigo, the Arrigo Family, the Saundercook Family, and hundreds of others in the dystonia community for the 5th Annual Chuck’s Run, taking place in Toronto on June 5, 2016. Chuck’s 5km Walk/Run for Dystonia aims to raise awareness and funds for research in honor of Chuck Saundercook. You can register, or donate to Chuck’s Run by visiting: www.dystoniacanada.org/ChucksRun


Under the Veil – The Hidden Artistry of Botox Injections * Harriet Berkel, DMRF Canada Support Group Member and Volunteer

11 shots: four on each eye and one above each eyebrow and the zinger in between my eyebrows. His demeanor was so pleasant that I actually almost looked forward to seeing him and prayed that maybe this time, the injections would take.

Photo Credit: Manny Berkal- Sarbit

Are there not enough mysteries already surrounding dystonia, no matter what kind you have? How did this disease happen to you? Could you have done something to avoid it? Will you ever go into spontaneous remission? Will there ever be a cure? Who knows the answers to any of these questions? But wait, as there is something you may not be aware of and if you suffer from blepharospasms (BEB), there may be hope for you yet. Someone had mentioned to me years ago that it was significant as to whom and how botulinum toxin was administered when it came to BEB. I paid some attention to that statement, but surely I was in good hands at my local movement disorders clinic. My eyelids had been misbehaving for years and it took even more time to get an official diagnosis. Finally, when I was referred to a neurologist, after seeing numerous ophthalmologists, who hadn’t a clue what was wrong with me (sound familiar?) I was administered botox- the magic elixir. I hoped I would be in the clear. After all, they knew what was wrong now and botox seemed to work for so many people. Sadly, there was little affect on my lids. My eyes still struggled, perhaps a bit less, as I went for my injections faithfully for about two years. The neurologist was the loveliest doctor I had ever met. He was gentle with each injection and there was a specific template he used. In all, I received

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I would faithfully go to my support group and listen to the struggles of others with a variety of dystonia’s, who too, weren’t getting the relief they sought from botox and felt hopeless and helpless. Where to turn? Botox is botox right? Not so fast! In the summer of 2014, the same neurologist I saw, referred a dear friend of mine who also had BEB, to an ophthalmologist, plastic surgeon. He thought that perhaps he could help her. It was like a miracle at first. We met for coffee at an outdoor café with her eyes open in the sunlight. I had never really noticed her eye color nor how they twinkled when she smiled, as her usual appearance was with dark glasses. This was remarkable. She smiled from ear to ear telling me every aspect of the appointment. Immediately, I asked my doctor for a referral and apologized if I was insulting him. His response was that he was equally frustrated and what did I have to lose? Indeed! This reflects just how wonderful this physician is. He was not threatened by my request and was honest. This was so refreshing and appreciated. I was terrified at my first meeting with the new doctor. My friend had said how much the shots hurt and how the technique and template wasn’t the same. Everything was different! He had me look up for the under the lid shots and stare at the ceiling. He also pulled the eye for the upper lids and there were only eight injections versus the previous eleven. They hurt like hell. The needle seemed to go in deeper and more along the lash line. I asked if I would be getting the three shots above the eyebrow and in-between? He said: “Whatever for? Did they ever help?”

I replied: “No, not really.” My eyes seemed better almost immediately. What was he doing that the others weren’t? If logic prevails, an ophthalmologist/ plastic surgeon would have greater knowledge of the “EYE” and all its surrounding muscles etc. A neurologist couldn’t possibly have the same expertise in the nuances of the eye. Why am I told to look up during the bottom lid injections? What is happening to the muscle of my eye when that happens? The ophthalmologist knows and it works. So there has been a bit of adjusting to the dosage and I have had to advocate for freezing which is done via cream application, which really helps the pain. The other benefit is that he does injections every 12 weeks versus 8. This sometimes is pushing it a bit but with good results I’m prepared to wait. The results can vary a bit but overall they are significantly better. My eyeballs burn and this is because my eyes are open more. They are very dry which is typical of BEB and I use more drops. Before when I had injections from the neurologist I never felt burning eyeballs. I’m on FIRE and it feels great after years of no results. That doesn’t mean the disease isn’t challenging or frustrating but it has given me improved quality of life and for that I am forever grateful for that referral. The difference is in the administration of the cocktail. Go see for yourself! *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 and options mentioned herein.

Do you want to share your dystonia story? Email: info@dystoniacanada.org and your story could be featured in an upcoming newsletter.


Join Us! DMRF Canada Upcoming Events EVENT

LOCATION

DATE

Toronto West Support Group Meeting

YMCA (325 Burnhamthorpe Rd.)

Mississauga, ON

April 9, 2016

Winnipeg Support Group Meeting

Winnipeg St. Boniface General Hospital

Winnipeg, MB

April 9, 2016

Vancouver Brain Health Fair (Conference)

Vancouver Convention Centre

Vancouver, BC

April 15, 2016

Toronto Support Group Meeting

32 Kern Street

North York, ON

April 22, 2016

Golden Triangle Support Group Meeting

Senioren Haus Common Room, 483 Ottawa St. S.

Kitchener, ON

May 1, 2016

Hamilton Support Group Meeting 88 Maplewood Ave.

Hamilton, ON

May 14, 2016

Fredericton Support Group Meeting

TBD

Fredericton, NB

June 24, 2016

Chucks 5 KM Walk/Run for Dystonia

High Park

Toronto, ON

June 5, 2016

Golden Triangle Freedom to Move Walk

Victoria Park

Kitchener, ON

June 5, 2016

Dystonia Information Session

First Mennonite Church 1305 Gordon Dr.

Kelowna, BC

June 7, 2016

DMRF Canada Edmonton Casino

West Edmonton Mall, Palace Casino

Edmonton, AB

June 7 & 8, 2016

Hamilton Freedom to Move Walk

Battlefield Park

Stoney Creek, ON

June 11, 2016

Sudbury Freedom to Move 5km Walk-and-Wheel for Dystonia Medical Research

Howard Armstrong Recreation Centre, 4040 Elmview Dr.

Hanmer, ON

June 12, 2016

DMRF Canada Calgary Casino

Elbow River Casino

Calgary, AB

June 17 & 18, 2016

First Annual DMRF Zoo Walk

Toronto Zoo

Toronto, ON

September 25, 2016

Edmonton Dystonia Symposium for Dystonia patients

TBD

Edmonton, ON

October 2016

Dr. Farias Dystonia Information Session for Dystonia patients

City Hall, Toronto

Toronto, ON

October 30, 2016

Volunteers Needed for Upcoming Alberta Casinos We are looking for volunteers for day and night shifts. It takes 40 people to staff a two-day event. We are reliant on friends and family and for the 2 days. The jobs are straight forward, and you receive training at the casino. You are provided with lots of help. Meals and snacks are provided. Edmonton Casino: June 7 & 8, 2016 The funds raised by the Alberta government casino are used for research, awareness and at the local level for programs such as Yogatonia, specially designed for those affected by dystonia. Please contact: Connie Zalmanowitz casino chairperson by phone 780 487 7844 or by email at zalman@shaw.ca Calgary Casino: June 17 & 18, 2016 The funds raised are used for research, awareness and at the local level for programs specially designed for those affected by dystonia. Please contact: Stefanie Ince by email at stefanieince@dystoniacanada.org if you are interested in getting involved. For details or more information on upcoming events please contact: info@dystoniacanada.org or visit: www.dystoniacanada.org.

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Research Progress: Then & Now 40 Years of Stimulating Research Progress and Discovery Worldwide 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 discover efforts. 40 YEARS AGO

TODAY

Most neurologists considered dystonia a psychiatric disorder.

Dystonia is a neurological syndrome of involuntary muscle contractions affecting one or more sites of the body, frequently causing twisting and repetitive movements or abnormal postures.

There was no consensus on the origins of dystonia. Some experts pointed to the basal ganglia, a brain structure involved in movement control.

Dystonia is considered a circuit disorder of the brain involving the basal ganglia, cerebellum and the cortex.

The field of ‘movement disorders’ did not yet exist.

Movement disorders is an important medical discipline in neurology. Awareness of dystonia in the medical community has improved.

There was no established treatment.

Multiple treatment strategies are available, providing greater opportunities for patients to feel and function better.

Botulinum neurotoxin injections were not available.

There are two brands of botulinum neurotoxin available, expanding the menu of treatment options.

It was clear dystonia could run in families, but no genes were identified.

23 genes and gene markers are identified. Every gene encodes a protein that is a potential drug target.

No targets for dystonia-specific drugs were known

Multiple targets are being pursued in early stages of drug development, possibly paving the way for new meds.

Limitations in medical technology restricted what was understood about dystonia and the brain.

An explosion of technological advancements has improved brain imaging, brain stimulation methods, and surgical practices. This boosted research and treatment opportunities.

*Reprinted with permission from DMRF Dystonia Dialogue, Spring 2016, Vol 39, No. 1. 8


Join the DMRF Canada Legacy Society Leaving a Legacy of Caring

A specific bequest may designate a particular item to be donated. (Example: I leave to the Dystonia Medical Research Foundation Canada (DMRF Canada ), located in Toronto, Ontario, Canada 2000 shares of XYZ stock.) Or, I leave to the Dystonia Medical Research Foundation Canada (DMRF Canada), located in Toronto, Ontario, Canada my savings account #23456 at (name of your bank).

The DMRF Canada Legacy Society was created to recognize those who have made a lifetime commitment in the battle against dystonia. Please let us know if you are considering making a bequest to the DMRF Canada in your will or would like to discuss any of the planned giving options below. A residual bequest is used to give all – or a portion of You can check the box on the following page for – one’s estate after specific and general bequests are more information, or contact Stefanie Ince at 1-800-361-8061 or stefanieince@dystoniacanada.org. distributed. (Example: [after specifying any items or amounts to other beneficiaries] I give the rest, residue and remainder of my estate to the Dystonia Medical Research Foundation Canada (DMRF Canada), located in Toronto, Ontario, Canada.) Bequest gifts are the simplest of planned gifts. A bequest is simply a statement in a will that stipulates A percentage bequest allows the amount to be distributed a gift to an individual or organization--for example, to the DMRF Canada to grow over the years as the estate the Dystonia Medical Research Foundation (DMRF) grows. (Example: [after specifying any items or amounts to Canada. All donations– including bequest gifts other beneficiaries] I give to the Dystonia Medical Research will enable the DMRF Canada to continue to move Foundation Canada (DMRF Canada), located in Toronto, forward in its mission to find a cure and to serve Ontario, Canada, 50% of the rest, residue and remainder of those affected by this debilitating disorder. When my estate.) making your gift, please note that the legal name of the DMRF Canada is “the Dystonia Medical Research A contingent bequest is one that will take effect only if Foundation Canada.” the primary intention cannot be met or if a beneficiary

Wills and Bequests

The general bequest is probably the most popular type of bequest and is usually stated as a designated dollar amount. (Example: I leave to the Dystonia Medical Research Foundation Canada (DMRF Canada) located in Toronto, Ontario, Canada, the sum of $50,000.)

Stay in Touch! Sign up for DMRFC’s e-mails for the latest updates and announcements: www.dystoniacanada.org/ newsletter. Like us on Facebook. Visit: www.facebook.com/DMRFC

predeceases the donor. (Example: In the event that ­­predeceases me, I direct that the Dystonia Medical Research Foundation Canada (DMRF Canada), located in Toronto, Ontario, Canada, receive his/her designated bequest.)

Life Insurance Gift You can name the DMRF Canada as the primary beneficiary of part or all of your life insurance policy. Ask your insurance professional to help you make the Foundation your beneficiary. Please contact Executive Director Stefanie Ince at stefanieince@dystoniacanada.org or 1-800-361-8061 to discuss your options.

Dystonia Canada Report - Spring 2016  

The Dystonia Medical Research Foundation (DMRF) Canada is happy to share news and upcoming events taking place in the dystonia community in...

Dystonia Canada Report - Spring 2016  

The Dystonia Medical Research Foundation (DMRF) Canada is happy to share news and upcoming events taking place in the dystonia community in...

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