Dystonia Canada Report A Newsletter from the Dystonia Medical Research Foundation Canada
Fall 2016
2016 Renewal Notice By supporting DMRF Canada with a minimum donation of $40.00 annually 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 sent to you each year; • Six issues of the Moving Forward E-Newsletter delivered to your inbox; • Ongoing special notices of DMRF Canada events and activities in your community; • A tax receipt for your gift.
How to support DMRF Canada: 1. Go to www.dystoniacanada.org and select “Donate Now” 2. Use the enclosed donation envelope, and return the form on the back of this newsletter 3. Call DMRF Canada at 1-800-361-8061 or 416-488-6974
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 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
Foundation Update Dear Friends, Since I joined DMRF Canada just over a year ago, we have had the chance to do some great things together. Thanks to all of you who have supported us, liked us on Facebook, or joined a support group.
I am well aware that there is still so much more to be done, and I am confident that if we continue to work towards the same goal we will succeed. Sincerely,
One thing that we have always wanted to do is to develop and launch a survey for individuals living with dystonia in Canada: we simply don’t know enough to be able to provide you (or your loved ones) with the care, support and information that will help to make your lives easier.
Stefanie Ince, Executive Director stefanieince@dystoniacanada.org
I’m pleased to announce that the Dystonia Survey is here! Visit page 5 in this report or find the survey online at: www.dystoniacanada.org/survey and you’ll have a chance to help direct the kind of information you receive from us moving forward – and to help us to strengthen the network and voice for those living with dystonia in Canada, with a chance to win some great prizing.
Secretary/Treasurer Pearl E. Schusheim 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.
Rem Murray, NHL Hockey Player, Dystonia Patient Allison Cook, Jenny Mulkins Former NHL player Rem Murray generously leant his star power to this year’s Chuck’s Run for Dystonia in an effort to shine a light on this debilitating movement disorder affecting approximately 50,000 Canadians. Not only did Rem participate in the 5km run (and he won in his category!) but in the weeks leading up to the event in June, Rem was on hand to share his personal and painful dystonia story with the media – in an effort to help raise awareness and much needed research funds for this relatively unknown disorder.
“Hockey was a huge part of my life and Dystonia was a real game changer,” says Murray. “Not only did it alter the course of my career but it profoundly affected my everyday life. My neck was frozen over my left shoulder with no mobility whatsoever, I was unable to function normally for over a year.”
Raymond Murray otherwise known as Rem Murray, was drafted by the LA Kings and played with the New York Rangers, Nashville Predators but most notably the Edmonton Oilers for six seasons. At age 31, in the height of his career, Rem was asked to do a TV interview. During the course of the show Rem was unable to turn his head towards the camera. While he had been experiencing neck issues for a few months, this incident led him to the Emergency department at Toronto Western General hospital where he had the exceptional good fortune to encounter top movement disorder specialist, Dr. Anthony Lang M.D. Dr. Lang quickly diagnosed Rem with Cervical Dystonia. “It was quite fortuitous that I happened to be on call when Rem was brought to Toronto Western Emergency. Generally, we don’t see patients with cervical dystonia in the ER and most physicians probably wouldn’t have known what to make of his complaints. Through this coincidence I was able to provide Rem with a very early diagnosis. Many patients aren’t so lucky and go undiagnosed and therefore inappropriately treated for many years,” says Dr. Lang Although the diagnosis came quickly for Rem, he was forced to retire from his NHL career to begin his journey of managing life with dystonia. Two years later Rem returned to the NHL and went on to play in the Stanley Cup finals with the Edmonton Oilers. He tributes his comeback to botulinum toxin treatments and a demanding therapy routine with an Osteopath.
Rem Murray played for the Edmonton Oilers from 1996 – 2002. After being forced to retire due to his dystonia, Rem was able to come back to play for the Oilers for the 2005 – 2006 season.
While not a death sentence, dystonia sufferers face a lifetime of physical pain, years of seeking the most effective treatment options, and for many the embarrassment and social
alienation that comes with their condition impacting the quality of their life and their passions. Today, Rem lives in Michigan with his wife Kim, and their four children. Now a Commercial Real Estate Broker, Rem spends his time with his family and coaching hockey. He’s a dedicated Dystonia Ambassador for the DMRF Canada. “I know how important this is - and want to continue to work to support this cause for a rare disorder that needs more attention,” says Rem Murray.
Rem and his wife, Kim at this years Chuck’s Run for Dystonia, which took place in June 2016.
Do you want to share your dystonia story? Email: info@dystoniacanada.org and your story could be featured in an upcoming newsletter.
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 1
The Private Lives of Proteins Researchers Investigate the Mysterious TorsinA* TorsinA is a celebrity in the world of dystonia proteins. Researchers are intrigued. They want to know where TorsinA hangs out, what it does, and the company it keeps. TorsinA is infamous for its role in causing most cases of isolated early onset dystonia. TorsinA is also suspected to play a role in other types of dystonia. A subtle mutation in the DYT1 gene causes an abnormality in the genetic code that prevents the body from properly producing TorsinA. When TorsinA becomes mutated, it does not function normally. Dystonia researchers are not yet certain how the TorsinA abnormality leads to dystonia, but progress is being made to better understand the role of normal TorsinA in brain cells and the biochemical consequences of the disease-causing mutation. Proteins bind to one another to complete specific functions in cells, so researchers are especially interested in proteins that interact with TorsinA. Studies have shown that TorsinA has a close relationship with two other proteins, LAP1 and LULL1. These relative newcomers to the spotlight of dystonia research are equally intriguing— little is known about them. Understanding the role of proteins in dystonia is a research priority because it may lead to new treatment strategies. TorsinA could become an important potential drug target if strategies to stop or reverse the negative consequences of abnormal TorsinA are developed. In late 2015, at the recommendation of the Medical & Scientific Advisory Council, the DMRF released a request for research proposals focusing on TorsinA. Three projects have been funded. The DMRF is partnering with the charitable foundation Cure Dystonia Now to fund this critical research. “TorsinB Developmental Expression and Selective Cell Vulnerability in DYT1 Dystonia” Chun-Chi Liang, PhD, University of Michigan Available dystonia treatments provide limited benefit and are plagued by side effects. There is a need for therapy targeted to the actual cause of the disease, which is a lack of function of the protein TorsinA. Dr. Liang recently generated a mouse model of DYT1 dystonia that shows
2
abnormal twisting movements similar to those seen in human patients. In studies exploring the cause of these movements and searching for a targeted therapy, he has found that increasing the levels of a related molecule called TorsinB can compensate for the loss of TorsinA function. Dr. Liang will explore this exciting idea further by testing whether increasing the levels of TorsinB in the mouse model can reverse DYT1-related effects in the brain and the resulting abnormal movements. “Dissecting the Function and Regulation of the TorsinA-LAP1 Holoenzyme” G.W. Gant Luxton, PhD, University of Minnesota TorsinA interacts with a protein called LAP1 but the specifics of how they function together are unclear. Additional proteins interact with the TorsinA and LAP1 complex as well. Understanding the relationships among these proteins is critical to understanding normal function of TorsinA and its role in DYT1 dystonia. Dr. Luxton is using a sophisticated imaging technique developed by his team that can monitor single molecules in living cells. The imaging experiments will allow them to evaluate models of TorsinA assembly and function. To identify potential partners of TorsinA and LAP1 they are using a new method known as BioID that detects proteins that are near each other in the cell. This project establishes a long-term interdisciplinary and collaborative effort towards understanding how TorsinA functions in brain cells. “Structural and Biochemical Analysis of TorsinA and TorsinA(ΔE)” Thomas U. Schwartz, PhD, Massachusetts Institute of Technology TorsinA is so small it cannot be visualized with the most powerful microscope. Instead, it must be transformed into a crystal and beamed with X-rays that reveal its threedimensional structure. Visualizing the atomic structure provides a full understanding of TorsinA architecture and potential function, and the ability to develop drugs that may directly influence its function. The goal of this proposal is to determine the atomic structure of healthy TorsinA and mutated TorsinA. This exciting research project should result in the long sought-after understanding of molecular basis for DYT1 dystonia, which is essential for the development of new drug therapies.
*Reprinted with permission from DMRF Dystonia Dialogue, Summer 2016 Vol 39, No 2
Genetic Isolated Dystonias There are several subtypes of isolated dystonia, sometimes called primary torsion dystonia, for which genes have been identified. The symptoms may appear somewhat similar.
Early Onset Generalized Dystonia (Gene: DYT1/TOR1)
TorsinA is a protein found in human brain, muscle, liver, and kidney tissue but the disease-causing consequences of abnormal TorsinA seem to only affect the brain.
DYT1 dystonia typically begins in childhood with the twisting of a foot or arm. Symptoms tend to begin in one body part and progress to involve additional limbs and the torso, but usually not the face or neck. The symptoms tend to be less severe the later in life they start and if they start in a hand or arm. About 15% of individuals who have the DYT1 mutation will develop dystonia. If a person does not manifest symptoms before the age of about 28 years, they will usually remain symptom free for life—even if they have the mutation.
Adolescent Onset Segmental/Generalized Dystonia (Gene: DYT6/THAP1) DYT6 may occur as focal and generalized dystonia. Although the symptoms may resemble DYT1 dystonia, the onset of DYT6 is usually in the late teens and symptoms are more likely to occur above the neck. Symptoms typically affect the muscles of the tongue, larynx, and face. Patients often have difficulty speaking. About 20% of individuals who have the mutation will develop dystonia.
Adult Onset Segmental Dystonia (Gene: DYT25/GNAL) DYT25 dystonia symptoms occur in the neck and face, often beginning after age 40. Mutations in the DYT25/ GNAL gene have so far been identified in a percentage of families and individuals impacted by dystonia. DYT6/ GNAL mutation may represent a rare cause of isolated laryngeal dystonia.
3
What’s in Your Medicine Cabinet? Overview of Oral Medications Used to Treat Dystonia* There are many oral medications that have been shown to improve dystonia. No single drug works for every individual, and several trials of medications may be necessary to determine which are most appropriate. Patients are typically started on low doses of medication that are gradually increased until the benefit is fully realized and/or side effects warrant a lower dose. For most individuals with focal and segmental dystonia, the treatment of choice is botulinum toxin injections, sometimes in combination with oral drugs. For patients with generalized dystonia, the primary treatment approach is often to begin with oral medications. Major categories of medications used to treat dystonia are described below. The information is taken with permission from a presentation by H. A. Jinnah, MD, PhD entitled, “Treatment Strategies for Dystonia: Medical and Surgical,” at the annual meeting of the American Academy of Neurology.
Trihexyphenidyl Trihexyphenidyl and anticholinergics (benztropine, biperiden, procyclidine, scopolamine) are among the most widely prescribed oral drugs for dystonia. Effectiveness is limited and side effects are common. Anticholinergics seem to be most effective and best tolerated in children. Some adults find them beneficial, while many do not. Effective doses of trihexyphenidyl range from 6-120 mg daily in 3-4 divided doses. Common side effects include sedation, impaired thinking, constipation, urinary retention, restlessness, insomnia, burry vision, and dry mouth.
Levodopa In children with dopa-responsive dystonia, the combination of levodopa with carbidopa can be remarkably effective at controlling symptoms at low doses and with minimal side effects. A trial of levodopa is generally recommended in all childhood onset dystonias. Levodopa also can be effective in some adults with focal limb dystonias, but cranial and cervical dystonias in adults do not typically respond to levodopa. Children with dopa-responsive dystonia may respond to doses as low as ½ of a 25/100 mg levodopa/carbidopa tablet twice daily. An adequate trial for both children and adults requires reaching a levodopa dose of 20 mg/kg in 3-4 divided doses for at least one month. Common side effects include nausea and vomiting, involuntary muscle movements, sedation, dizziness, and impaired thinking.
Tetrabenazine is used to treat chorea in Huntington’s disease and may be helpful in controlling a variety of involuntary movement symptoms. Individuals with isolated/primary dystonia may respond, though best responses appear to occur in those with drug-induced dystonia. The effective dose range is 12.5-300 mg daily in 3-4 divided doses. Common side effects include sedation, parkinsonism, impaired thinking, depression, dizziness, and insomnia.
4
Dopamine Receptor Antagonists Dopamine receptor antagonists include fluphenazine, haloperidol, olanzapine, pimozide, risperdal, and others. These drugs carry a risk of causing tardive syndromes that may worsen dystonia, so the use of these drugs for the treatment of dystonia is generally discouraged. One exception may be clozapine, where the risk of worsening dystonia seems to be small. However, this drug is associated with problematic side effects including sedation and a life-threatening blood disorder.
Baclofen Baclofen may be useful in childhood onset dystonias, especially those with spasticity. Some adults also experience benefits; many do not. Effective doses range from 30-120 mg daily in 3-4 divided doses. Common side effects include sedation, nausea, impaired thinking, dizziness, and loss of muscle tone. Sudden discontinuation or rapid lowering of the dose can be associated with severe withdrawal reactions.
Clonazepam Clonazepam and related benzodiazepines (chlordiazepoxide, diazepam, lorazepam, and others) may be most useful for blepharospasm and dystonias with a jerky or tremoring quality. Effective doses of clonazepam range from 0.5-6 mg daily in 3-4 divided doses. Common side effects include sedation, impaired thinking or coordination, and depression. There also is a risk for dependency and loss of effectiveness over time. Sudden discontinuation or rapid lowering of the dose can be associated with severe withdrawal reactions.
Muscle Relaxants “Muscle relaxants” are a broad category of drugs that includes baclofen and benzodiazepines as well as carisoprodol, cyclobenzaprine, metaxalone, methocarbamol, tizanidine, and others. Responses to these drugs vary widely, but children and adults with many different forms of dystonia often derive at least partial benefits. They may be particularly useful in patients who experience pain from uncontrolled muscle pulling.
Other Drugs Many other drugs may be prescribed for specific forms of dystonia, for example, carbamazepine and other anticonvulsants seem effective in paroxysmal kinesigenic dyskinesia, mexilitine and intravenous lidocaine may be useful in some focal dystonias, and alcohol can benefit myoclonus-dystonia. Among many other drugs, the following are sometimes recommended: amphetamines, cannabidiol, cyproheptadine, gabapentin, nabilone, and riluzole. Further studies are needed to clarify the usefulness of these drugs in dystonia. If you have questions about the oral medications you are prescribed, talk to your doctor and/or pharmacist. The DMRF continues to push for the development of new drugs and to repurpose existing oral medications that may be effective for treating dystonia.
*Reprinted with permission from DMRF Dystonia Dialogue, Summer 2016 Vol 39, No 2
The 2016 Dystonia Canada Survey Tell Us About Your Dystonia and You Could WIN a 2016 iPad PRO or one of 10 $250 VISA Gift Cards
For Your Chance to
WIN
Help us to improve the lives of patients with dystonia! Please tell us about yourself by completing this easy five-minute survey by December 22, 2016.
You can also fill in the survey online at: www.dystoniacanada.org/survey All responses will be kept strictly confidential. All surveys completed will be entered into a draw. Please visit: www.dystoniacanada.org/surveyrules for a complete listing of rules and regulations.
1. Please select your gender:
Male
Female
COMPLETE THE SURVEY FOR YOUR CHANCE TO WIN A 2016 iPad PRO
2. Please provide your age range:
Under 25
26-40
41-65
Please use the envelope provided and mail completed survey to:
Over 65
121 Richmond St. W. Suite 305 Toronto, ON M5H 2K1
or 1 of 10 $250 VISA Gift Cards
3. What Province do you currently reside in? 4. What form of dystonia applies to you:
Neck / Cervical / Torticollis
Hemifacial or Facial
Blepharospasm / Eyelids
Other:
5. Do you currently receive botulinum neurotoxin injections for your dystonia?
Yes (Please proceed to question 6)
No (Please proceed to question 11) 5
The 2016 Dystonia Canada Survey Page 2 of 4
6. How often do you receive your botulinum neurotoxin injections?
More than every 12 weeks
Every 12 weeks
Every 10 weeks
Every 8 weeks
Other (please specify):
7. On the day of your injection appointment, how would you typically describe the status of your dystonia?
My dystonia is troublesome and I wish I could be treated/re-injected sooner
My dystonia is manageable, but I am not at my best and it affects my ability to perform my day to day activities
My dystonia is under good control
My dystonia status seems to be different each time I go for treatment; it may be okay or it may be troublesome
My dystonia can make sleeping difficult for me
My dystonia can get me feeling depressed
My dystonia can cause me to avoid work, family or social events
My dystonia causes me physical pain
My dystonia can cause me to take days off work
None of the items above apply to me
Other (please specify):
6
Cut along dotted line
8. As the effect of your injection treatment begins to wear off, please check any of the symptoms or conditions below that you feel start to emerge and affect your day to-to-day life and activities.
The 2016 Dystonia Canada Survey Page 3 of 4
9. Are you concerned about your botulinum neurotoxin treatment? If so, what concerns you the most? Please check all that apply to you.
The pain of the needle / injection
The cost of the medication
The safety of the medication
Other (please specify):
10. Please indicate how you pay for your botulinum neurotoxin medication.
I have private insurance that pays 100% of the medication cost
I have private insurance, but it is not 100% full coverage
I am 100% covered by my home province’s medical plan (public insurance)
I don’t have private or public insurance options and I pay out of pocket
Other (please specify):
11. I would like to learn about additional therapies or tools that may help alleviate some of my symptoms that come with my dystonia.
Yes. My email address is:
No
Cut along dotted line
12. I would like to receive information regarding any changes in research findings or available treatments for my dystonia when available.
Yes. My email address is:
No
7
The 2016 Dystonia Canada Survey Page 4 of 4
13. The dystonia related news that I am most interested in (Check only one):
Dystonia research updates
Connecting with others who have dystonia
Treatment options
Upcoming events
Other (please specify):
14. What is the biggest challenge you face with your dystonia? 15. Are there any causes or issues you think aren’t being covered enough by the DMRF Canada? If so, please list them. THANK YOU FOR YOUR SUPPORT!
Cut along dotted line
The results of the survey will be pooled and analyzed by a movement disorders neurologist who will provide a report for us to share with all responders and the DMRF membership in an upcoming newsletter.
8
Paroxysmal Dyskinesias May be Sign of Glut1 Deficiency Syndrome Genetic Testing May Detect Rare but Underdiagnosed Genetic Disorder* Investigators have discovered that certain dystoniacausing genes are associated with other diseases. In these cases, dystonia may be one possible manifestation of a more complex syndrome. Paroxysmal dyskinesias, which often include episodes of dystonia, provide one example. Several genes for paroxysmal dyskinesias have been identified: DYT8, DYT9, DYT10, and DYT18. As it turns out, investigators ultimately determined that DYT9 and DYT18 are the same. Commonly referred to as SLC2A1/Glut1, this gene is associated with Glucose Transporter Type 1 deficiency syndrome (Glut1 DS), a rare genetic disorder that can present with a spectrum of signs and symptoms. Glut1 DS may include paroxysmal dyskinesias (DYT9/18), seizures, and additional findings such as intermittent ataxia, choreoathetosis, dystonia, and alternating hemiplegia. Melanie Brandabur, MD is a movement disorders specialist at University of California San Francisco and Medical Director at Ultragenyx Pharmaceutical Inc., a company focused on the development of therapies for rare diseases. “There are a lot of different movement disorders that can be symptoms of Glut1 deficiency syndrome,” she explains. “The dystonia that is associated with Glut1 DS presents a bit differently than some of the other paroxysmal dyskinesias. Symptoms are often evoked by exercise or stress and are generally not responsive to the drugs that other paroxysmal dyskinesias are. Some patients will have other types of movement disorders during an episode. They may have dystonic movements, tremor, or even movements that look like parkinsonism.” Glut1 DS is caused by a genetic defect in how sugar reaches the brain. Sugar molecules provide the primary source of energy for the brain and Glut1 DS deprives the brain of the fuel it requires to function properly. There are currently no treatments approved by the Food & Drug Administration (FDA) specifically to treat Glut1 DS. Special diets, such as the ketogenic diet (high fat, low carbohydrate and protein), may be prescribed for some patients.
Glut1 DS is quite a spectrum and I don’t think we have a complete understanding yet of the older Glut1 DS population,” Dr. Brandabur continues. Genetic testing for Glut1 DS may help identify patients. “People who have movement symptoms that come and go, and that are provoked by things like fasting, stress, exercise, fever, fatigue, changes in activity level—these are the people who should talk to their doctor about getting tested,” says Dr. Brandabur. Ultragenyx is developing an experimental treatment for Glut1 DS. A randomized double-blind placebo controlled study testing UX007 (triheptanoin) in Glut1 DS patients with movement disorder symptoms will begin recruiting in the near future. For more information, visit Glut1study.com or contact Kim Mooney, Associate Director of Patient Advocacy, at 415-483-8872 or kmooney@ultragenyx.com.
PAROXYSMAL DYSKINESIAS are a group of movement disorders characterized by episodes of involuntary movements. The movement disorder symptoms disappear in between the episodes.
PUTTING THE PIECES TOGETHER Researchers discovered that the DYT9 and DYT18 genes responsible for paroxysmal dyskinesias are the same gene. Known as SLC2A1/GLUT1, this gene is associated with Glut1 DS, a rare genetic disorder.
A genetic test for Glut1 DS may be part of the work-up for children with intractable epilepsy, so these children may get a timely diagnosis. “It’s more complicated when the patient presents at an older age just with movement disorders, and they don’t have a history of seizures,” explains Dr. Brandabur. “These are the patients I worry about being underdiagnosed because they didn’t have the typical epilepsy that would have brought them to the attention of a clinician experienced with diagnosing Glut1 DS.” Glut1 DS is also sometimes diagnosed in the parent of a child being evaluated for intractable seizures or other symptoms of Glut1 DS. “Sometimes the symptoms are mild enough that it doesn’t interfere with life too much, but for other people the symptoms may be really profound.
*Reprinted with permission from DMRF Dystonia Dialogue, Summer 2016 Vol 39, No 2
9
Raising Funds – and Awareness for Dystonia Research An Employer’s emotional plea leads to thousands being raised for dystonia research It started on June 1, 2016 – just four days before the 2016 Chuck’s Run for Dystonia, when Alicia McGill’s boss sent an emotional email to the entire company, letting them know of her plans to attend Chuck’s Run, and encouraging everyone in the company to support her. It had been earlier that day that Alicia had finally told her boss the truth about her dystonia: that it had had gotten so bad, due to a severe loss of motor skills, that it was impossible for her to do her job, and that she needed to go on short term leave. She also told him that she would be participating in Chuck’s Run that weekend – a friend would be pushing her in a wheelchair.
Within four days, Alicia had raised over $17,000 for dystonia research.
episode occurred, she was terrified, isolated and alone. Alicia turned 27 in the emergency room – at the time, the neurologist on call said that she was experiencing ‘an episode of dystonia’. They ran dozens of tests including a spinal tap. “I’ve had every possible test done” says Alicia, “but they couldn’t figure out what it was. They kept sending me home even though it was clear something wasn’t right – but they just didn’t have any answers for me.” For years Alicia kept her dystonia to herself. Keeping the secret from family, friends and her co-workers was trying, and then in the beginning of 2015, unable to hide the twitchy movements, Alicia had another collapse, where she completely lost her motor skills. The secret was out.
Alicia’s boss isn’t the only hero in this story. Her father, Wayne earned close to $2,000 on his own, through constant door knocking, the organization of bake sales, and a heart-wrenching letter that he shared with friends, family and neighbours. “It was my father’s initial plea for help that got my family and myself motivated to do Chuck’s Run. The magnitude of how many individuals were touched and inspired to give was amazing, and it took the efforts of my father and my boss to help raise these funds. Its amazing what a community can do when it comes together” Alicia’s dystonia story starts in 2010 – however, she was only formally diagnosed – with psychogenic or “functional” dystonia in November 2015. Six years ago, when her first
10
Alicia and her father Wayne, pictured with the top fundraising prize at Chuck’s Run for Dystonia.
As a Credit Manager at her company, Alicia enjoyed a challenging, fastpaced career, and was working toward her CPA designation. While completing a course toward the designation, the stress took its toll and Alicia was back to being basically immobile.
“I’ve seen dozens of doctors and specialists; no one could help me. Finally, when I received my formal diagnosis back in November 2015, I realized I couldn’t do this alone. I finally accepted the fact that I could no longer put on a happy face and pretend that everything was okay. Everything was not okay – everything was so difficult. On Sunday, June 5th, Alicia with the support of her family and friends, broke all Chuck’s Run fundraising records when Executive Director, Stefanie Ince announced that she had raised over $17,000 for dystonia research. “We were just completely in shock”, said Wayne, Alicia’s father. “I had no idea how many people were willing to help. I’m just so overwhelmed by the love and support we’ve seen from everyone. So many people had never heard of dystonia before we spoke to them about Alicia – and now they know. Alicia’s dystonia - psychogenic or “functional” dystonia refers to the uncommon but well-documented situation where dystonia can be attributed to a combination of neurological and psychological causes. There is still much to be learned about this type of dystonia – and to date there are very limited treatment methods available. “Its frustrating, says Alicia, “we need more funds for research and education – because right now there aren’t many options for me - the more we know about this terrible disorder, the more we can do, the more lives we can change”. Today Alicia is on leave from her company, but in touch with them regularly and working to let her body heal until the day she can come
back to work. “Having the love and support of my boss and colleagues has made all of the difference in my recovery. A while ago I would have wanted to hide under the covers, but my boss has helped me to be honest about my disorder. I have suffered so much physically, but I’ve learned so much about what I can do. Telling the truth has awaked a whole bunch of people who didn’t know about dystonia before – they all donated to this cause. You can choose to be the person who suffers, or choose to see this as an opportunity. Its all about your perspective.”
“The thing is about the company – they are like a family. My boss put the call out to everyone and everyone showed up for me. How do you even say thank you for something like that?”
Alicia with former NHL Hockey Player, Rem Murray at Chuck’s Run for Dystonia.
To read more about Alicia’s story and to see her fathers letter, visit: www.dystoniacanada.org/aliciasstory
IN TRIBUTE
This year’s Chuck’s Run for Dystonia was truly a memorable event, breaking fundraising records again, some great press coverage, and a number of special guests, including author Brenda Currey Lewis, former NHL hockey player Rem Murray, and this years Ambassador, Jesse Arrigo. This year’s event had close to 300 participants and over 90 volunteers, raising over $70,000 – a 47% increase in revenue over last year’s event.
DMRF Canada extends our condolences and gratefully acknowledges the generous gifts received in memory of the following: René Bérubé Bunny Ferguson Bessie Lillian McMurray
A sincere thanks to Merz Pharma for their $5,000.00 sponsorship. For a complete list of sponsors and photos from the event visit: www.dystoniacanada.org/chucksrun. We are looking forward to an even more successful event next year. If you are interested in getting involved in next year’s event, please email info@dystoniacanada.org as planning for next year’s event will begin shortly. 11
Freedom to Move Walks a Success The DMRF Canada is extremely grateful for the grassroots volunteers across the country working to improve dystonia awareness and raise funds for medical research. Every volunteer makes a difference.
Dystonia Support Group Hamilton Area The Hamilton Freedom to Move Walk went very well! We were happy to welcome some new members who joined us on the walk – and thanks to the support of all involved, the support group was able to raise even more funds than last year for dystonia research and support.
The Hamilton Dystonia Support Group had a very successful Freedom to Move event.
Dystonia Support Group, Golden Triangle The Golden Triangle walk was held on June 5, 2016. Despite the pouring rain, we were able to eventually complete our walk. There were five people in attendance Merilyn and Bob Kaufman, Penny Patterson, Brian Mullen and Judy Harsch. The walk was able to raise $1,510.00, which is very good considering it was between three people. Congratulations to everyone who attended, and thanks to our donors and supporters!
Dystonia Support Group of Sudbury and District The Support Group of Sudbury District had a very successful Freedom to Move event, raising just over $19,363!!! Special thanks to Frank Guy, Mary’s husband, for sponsoring the production of the T-shirts. Congratulations to everyone.
The Sudbury and District Dystonia Support Group in their new T-shirts, at this year’s event.
12
The Golden Triangle Dystonia Support Group were able to walk, despite a rainy day.
Consider Hosting Your Own Event Do you have an idea for your own event? It’s fun and we can help you make it easy to do. Consider: Golf Tournament, Dinner Party, Car Wash, Musical Gather/ Comedy Festival, Group Walk, Bowling Tournament, or anything else! Contact us for information on event fundraising: info@dystoniacanada.org, 1-800-361-8061 or: 416-488-6974
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.)
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.
DMRF Canada 121 Richmond Street West, Suite 305 Toronto, ON M5H 2K1
Non-Profit Organization CAN. Postage PAID #######
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 learn more about joining a local support group.
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
$25 a month
$20 a month
$10 a month
$
a month
Option 1:
I am sending 12 postdated cheques made payable to the Dystonia Medical Research Foundation Canada.
Option 2:
Please charge my credit card each month:
Card #: Expiry:
OR Yes, I want to support dystonia research by making a one-time donation
$100
$50
$25
$
Option 1:
I have enclosed my cheque made payable to the Dystonia Medical Research Foundation Canada.
Option 2:
Please charge my credit card:
Card #: Expiry:
Please provide an email address: Make online donations at: dystoniacanada.org/donate-now * Each payment, including the first payment, will be made in the middle of the month. You can stop your monthly gift at any time by contacting DMRF Canada.
Charitable #12661 6598 RR00001
Cut along dotted line
$250