Movement Disorders News

Both the Robert and John M. Bendheim Parkinson and Movement Disorders Center at Mount Sinai, and the Alan and BarbaraMirken Department of Neurology Movement Disorders Center at Mount Sinai Beth Israel, are committed to offering the latestbreakthroughs to our patients. Here are three new therapies for movement disorders, which are available to our appropriatepatients immediately, or will be in the near future:

1. Addressing off times in late-stage Parkinson’s disease. In late-stage Parkinson’s disease (PD), the spontaneous emptyingof the stomach becomes delayed and unpredictable, so the timing of when oral medications leave the stomach and are absorbed in the small intestine can be affected. The Food andDrug Administration (FDA) recently approved a new therapy toaddress this concern.

Duopa is a carbidopa-levodopa enteral liquid suspension thattreats the motor fluctuations seen in advanced-stage PD. Theterm “enteral” means “passing through the intestine” and, indeed,Duopa therapy uses a small, portable infusion pump that deliv-ers the medication directly into the small intestine for 16 contin-uous hours via a tube placed by a gastroenterologist. Patientscan have their dose adjusted by a movement disorders specialistwho will program their Duopa pump during follow-up appoint-ments to achieve optimal PD symptom control.

“There is an unmet need for treatment options for patients with advanced Parkinson’s disease. As the disease progresses, it canbe difficult to control motor features,” says C. Warren Olanow, MD, Professor, Department of Neurology and Department of Neuro-

science at the Icahn School of Medicine at Mount Sinai, and lead investigator of the Duopa pivotal trial. “In clinical trials, Duopa was shown to significantly reduce the amount of off time advancedParkinson's disease patients experienced.”

2. A new deep brain stimulation choice. Deep Brain Stimulation (DBS) is a neurosurgical therapy in which electrical stimulation of certain parts of the brain improves symptoms, such as slowness of movements, rigidity,and tremor. The St. Jude’s Medical DBS system, called the BrioNeurostimulation System, is the second FDA-approved systemavailable in the United States to treat PD and essential tremor.The first DBS system, Medtronic, was approved in 2002. Our patients are expected to have access to the Brio system early next year.

continued on page 3

Three New Therapies You Should Know About

Duopa is given over a period of 16 hours by a pump that delivers the medication directly into the intestines.

Robert and John M. Bendheim Parkinson and Movement Disorders Center at Mount Sinai

AUTUMN 2015

Alan and Barbara Mirken Department of Neurology Movement Disorders Center at Mount Sinai Beth Israel

Movement Disorders News

“I was embarassed to walk in front of people because of my dystonia symptoms. Now, after deep brain stimulation, I’m so relieved. It’s like a ton of bricks liftedfrom my shoulders.” – sarah lederer

Read Sarah’s story on page 6

The Division of Movement Disorders at theMirken Department of Neurology at Beth IsraelMedical Center is a Bachmann-Strauss DystoniaCenter of Excellence, as well as a NationalParkinson Foundation Center of Excellence.

Bendheim Parkinson and Movement Disorders Center at Mount Sinai

Director of Movement DisordersSteven Frucht, MD

NeurologistsCatherine Cho, MDPaul Greene, MDC. Warren Olanow, MDToni Pearson, MD (Pediatrics)Ritesh Ramdhani, MDDavid Swope, MDWinona Tse, MDMiodrag Velickovic, MD

NeurosurgeonBrian Kopell, MD

Cognitive NeurologistMartin Goldstein, MD

NeuropsychologistHeidi Bender, PhD

FellowsJames Philip Battista, MDDebra Ehrlich, MDErin M. Feinstein, DOLinn Katus, DO

Social WorkerJulie Safar, LCSW

Clinical Research CoordinatorJoan Bratton, BA, CRC

Medical AssistantJahaira Abreu, MA

Administrative Assistant/Fellowship CoordinatorInez Cintron

Program Coordinator, Deep Brain StimulationPatrick Flynn

Mirken Department of Neurology Movement Disorders Center atMount Sinai Beth Israel

Chair of the Mirken Department of Neurologyand Division Chief of Movement DisordersSusan B. Bressman, MD

NeurologistsErin Deegan, MDNaomi Lubarr, MD (Pediatrics)Rivka Sachdev, MDRachel Saunders-Pullman, MD, MPHLawrence Severt, MD, PhDVicki Shanker, MD

PsychiatristMark Groves, MD

NeuropsychologistChristina Palmese, PhD

FellowsSarah E. Buckingham, MDInge A. Meijer, MD, PhDJeffrey Ratliff, MDJonathan Squires, MD

Genetic CounselorsBrooke Johannes, CGCDeborah Raymond, MS, CGC

Nurse PractitionerJoan Miravite, FNP

Nurse ScientistSheree Loftus Fader, PhD

Clinical Trials ManagerEmily Muller, CCRP

Research Nancy DoanRobert OrtegaImali PereraAnna Vaigast

Message from the Leadership

Susan B. Bressman, MD Steven Frucht, MD

We are pleased to introduce this first issue of Movement Disorders News, a publication of the Robert and John M. Bendheim Parkinson and Movement Disorders Center at Mount Sinai and the Alan and Barbara Mirken Department of Neurology Movement Disorders Center at Mount Sinai Beth Israel.

This newsletter will come out twice a year to provide a look at what’s new in the field of movement disorders, what’s happening in our programs, as well as update patients and their families on research trials and support resources. We hope you enjoy it and we welcome your input,comments, and submissions (see page 12 for how to send us your feedback).

Since the 2013 merger of Mount Sinai and Continuum Health Partners (see page 12 for more),our two formerly separate programs are combined into what is now the largest and most comprehensive movement disorders group in the country. Together, we see more than 6,000 unique patients, which represents a tremendous expertise in a wide range of movementdisorders.

Our strength is not reflected in those numbers alone. We have a varied faculty and clinical staffwith a diversity of interests and training. We are just beginning to explore potential collaborationsbetween our two campuses not only in clinical care, but also in research and training. This collabo-ration is a work in progress.

We want to emphasize that the individual patient will be pleased to see that nothing much haschanged in his or her personal care experience. The combining of our programs, however, willeventually give patients greater access to a broader range of clinical and observational trials,as well as the quickest routes to the discoveries that result from our research and the work of other scientists elsewhere. Within the same health system, the finest minds in movement disorders now have more opportunities to meet and share best practices. In fact, many of our stafffrom both programs trained or worked together in the past. Some were even officemates at otherinstitutions! Because of these shared backgrounds and experiences, we trust that our evolutiontoward more integration will be a healthy and organic one.

We also hope to train movement disorders experts in a more cooperative way. Currently, eachprogram has four fellows (see page 5 for their profiles). We’re also learning from each other andenriching our already excellent roster of patient support resources. For instance, we are very excited to be reaching out to the community and partnering with the 92nd Street Y in a well-received exercise program called PEP for Parkinson’s disease patients (see page 11 for more).

Finally, we are delighted to welcome Barbara G. Vickrey, MD, MPH, our new System Chair of Neurology (see page 3 for more). Dr. Vickrey is a leader in outcomes research. Her career hasbeen dedicated to asking questions such as these: At the end of the day, how are patients doing?How do we measure how they’re doing and measure it properly? Are we reaching everyone we need to reach: all ages, socioeconomic groups, races, and ethnicities? We are excited that Dr. Vickrey’s work fits in so seamlessly with our patient-centered values.

Because, ultimately, our patients are our greatest concern. Most of the conditions we treat do notyet have a cure, but, as we search diligently for cures, we can offer treatments and strategiesthat make a difference in wellness. Our two patient perspectives tell the story most convincingly(see pages 4 to 7). With the help of their physicians at the Mount Sinai Health System these patientsare living better lives today than they were just a few years ago.

“We are delighted to welcome Dr. Vickrey tothe Mount Sinai Health System, knowing that she brings unique expertise to the Department of Neurology,” says Kenneth L.Davis, MD, Mount Sinai President and Chief Executive Officer. “She will be a tremendous mentor for the next generationof neurologists and health policymakers here in line with our goal of providing superiorcare to all.”

Dr. Vickrey, recently named as the Henry P.and Georgette Goldschmidt Professor of Neurology, specializes in translating clinicalevidence into improvements in routine medical practice that benefit patients’ health.Her wide-ranging accomplishments include demonstrating thatcollaboration among health care systems, community organiza-tions, and caregivers can improve quality of care and outcomesfor dementia patients. She also designed health care delivery innovations, including new ways to care for veterans withParkinson’s disease.

“It’s clear that we have fabulous movement disorders programsthat excel in clinical care, research, and training at both theMount Sinai and Beth Israel campuses,” says Dr. Vickrey. “I amvery excited to do my part in helping the faculty and programsacross the entire Mount Sinai Health System collaborate so as tobuild on their individual strengths. It’s a great time to be joiningthe department to see those strengths developed into a single,world class, academic movement disorders program.”

Dr. Vickrey was elected to the Institute of Medicine of the National Academies in 2011, a high honor in academic medicine.

She also leads a five-year, stroke prevention/intervention research program in health dis-parities funded by the National Institute ofNeurological Disorders and Stroke. She serveson the Science Committee of the AmericanAcademy of Neurology and is Vice President ofthe American Neurological Association.

“Dr. Vickrey’s outstanding research dovetailswith efforts throughout the Mount Sinai HealthSystem and presents exciting opportunities forcollaborative research across our academic departments,” says Dennis S. Charney, MD,Anne and Joel Ehrenkranz Dean, Icahn Schoolof Medicine at Mount Sinai, and President for Academic Affairs for the Health System.

“Her contribution will go beyond Neurology as she enlivens col-laborations with Population Health Science and Policy, Geriatricsand Palliative Medicine, the Mount Sinai Institute of Technology,and the Institute for Health Care Delivery Science,” he adds.

Dr. Vickrey served for 25 years on the faculty of the University of California, Los Angeles (UCLA), where she was Professor ofNeurology and Director of the departmental Health Services Research Program. She was also Associate Director for Researchat the Greater Los Angeles Veterans Administration Parkinson’sDisease Research, Education and Clinical Center.

Dr. Vickrey earned her MD at Duke University School of Medicineand her MPH at the UCLA School of Public Health. She completedpostgraduate clinical training in medicine and neurology at theUniversity of Washington in Seattle, and then research fellow-ships in the Robert Wood Johnson Clinical Scholars Program atUCLA and the RAND/UCLA Center for Health Policy Study.

Newsroom

New System Chair of NeurologyRenowned neurologist Barbara G. Vickrey, MD, MPH, has recently joined the Mount Sinai Health System as System Chair for the Department of Neurology at the Icahn School of Medicine at Mount Sinai.

The Brio system consists of electrodes implanted in different locations in the brain and wire leads that connect the brain elec-trodes to a pulse generator that is implanted in the chest. The pulsegenerator delivers the stimulation to the electrodes in the brain to control the symptoms. Patients who are considering DBS therapyshould speak to their neurologist as to which device is most appropriate for their case.

3. Help to treat “wearing off” PD symptoms. The FDA recently approved a new extended-release formulation ofcarbidopa-levodopa called Rytary. It is intended to treat “wearingoff,” which is when PD patients begin to feel that the improve-

ment gained from a dose oflevodopa does not last untilthe next dose of medicationbegins. Rytary contains bothimmediate and extended-release levodopa encased in

capsules that are taken anywhere from three to five times daily.Clinical trials showed approximately two hours of reduced offtime without troublesome dyskinesia for patients taking Rytary.This new medication offers patients another pharmacological option to help improve their quality of life, which is oftentimeshampered by motor fluctuations.

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Three New Therapies You Should Know About (continued from page 1)

Extended-time release Rytary

Patient Perspective

Canadian Drew Heighway, 57, hasalways been a gifted athlete. As a young adult, he played hockeyand lacrosse, and began partici-pating in triathlons in his 40s.Then something happened.

“In 1998, while out for a run onthe west side of Manhattan, Icramped up so badly I couldbarely get back to my apartment,”Drew recalls. “I ignored it, but in 2006, I was diagnosed withParkinson’s disease (PD). I wasonly 49 years old.”

When Side Effects Are Debilitating Both Physically andPsychologicallyDrew was experiencing typicalearly symptoms of PD: a stiffshoulder, diminished gait, andpainful muscle cramps in his foot. The main symptoms of PD include tremor, stiffness, slowness, and balance problems,caused primarily by the death of dopamine-producing neuronsin the brain. As the years progressed, so did Drew’s PD symp-toms and the number of drugs prescribed to treat them.

PD medications mimic the action of dopamine in the brain, butthe drugs do not affect the progression of the disease, only thesymptoms. The therapeutic effect of the drugs often diminishesover time, making treatment for some patients unreliable. Sideeffects of medications can also be quite disabling, which is whatDrew experienced, a particularly devastating consequence toanyone, let alone an athlete. “I started to experience faintingspells after beginning one of the PD medications,” he says. “Ipassed out on a number of occasions. The worst was on a verybusy commuter train going into Manhattan.”

The many medications Drew relied on to control his PD werealso taking a toll on his mental health. “The drugs absolutely impaired some of the decisions I made,” he recalls. “Mood swingswere top of the list. I was not an easy person to live with.”

The Decision to Undergo Deep Brain Stimulation Surgery Was Based on Careful Consideration and Thorough ResearchDrew began to consider a non-drug treatment for PD called deep brain stimulation (DBS) surgery. DBS involves implanting

one or two electrodes in thebrain where the symptoms of PD are generated. The exact area of implantation is carefullydetermined before the surgeryvia sophisticated imaging techniques. Once in place, theelectrodes are connected via alead tunneled under the skin to a generator device implantedin the chest wall. After careful programming, the generator delivers electrical current via the implanted electrodes and suppresses the movement disorders associated with PD.

In 2014, after investigating neurosurgeons at four of the nation’s leading hospitals, Drew decided to have his DBS surgerydone at The Mount Sinai Hospital.

“I made the decision to go forward with Dr. Brian Kopell in Aprilof 2014, after my wife and I met with him for the first time,” says Drew. “His confidence was infectious! We knew right awayhe would be the one to operate on me.” Brian Kopell, MD, is the Director of the Center for Neuromodulation at Mount Sinai.

Ritesh Ramdhani, MD, a neurologist and movement disordersspecialist at the Bendheim Parkinson and Movement DisordersCenter at Mount Sinai, met with Drew and his wife prior to hisDBS surgery. “Dr. Ramdhani answered all of our questions andhe was extremely forthcoming with expectations associated with the programming procedure for both my wife and me,” saysDrew. Usually, a few weeks after DBS surgery, the device that is implanted is programmed to deliver the electrical signal to the brain. Programming is adjusted over a period of weeks ormonths in order to obtain the most effective results.

The DBS Results: A Decrease in Meds, An Increase in Quality of LifeDr. Kopell performed Drew’s DBS surgery in the summer of 2014. Dr. Ramdhani continues to work as part of Drew’s team, optimiz-ing his quality of life by making exacting adjustments to his DBS system and medication regimen. “I’m still on medications,but about 70 percent less of them than before DBS,” notes Drew.When asked about the success of his surgery, Drew says, “I feellike I’m back in sync, not only with myself but with my family.

A Gifted Athlete Takes on Parkinson’s Disease And Gets His Life Back in Sync and in FocusDrew Heighway was 49 years old when he was diagosed. At risk was his commitment to andlove of fitness and athletics. Here's how he persevered.

Drew (right) with Ritesh Ramdhani, MD, and Brian Kopell, MD

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James Philip Battista, MD Dr. Battista completed his medicine internshipat Beth Israel Medical Center and his neurologyresidency at Montefiore Medical Center. He is now a fellow at the Bendheim Parkinson andMovement Disorders Center.

Sarah E. Buckingham, MD Dr. Buckingham completed her internship andher neurology residency (as Chief Resident) at Yale-New Haven Hospital. She is now a fellow at the Mirken Department of NeurologyMovement Disorders Center.

Debra Ehrlich, MD Dr. Ehrlich was an intern at UMDNJ (Rutgers)and Chief Neurology Resident at Albert Einstein College of Medicine/Montefiore. She is now a fellow at the Bendheim Parkinsonand Movement Disorders Center.

Erin M. Feinstein, DO Dr. Feinstein was an intern at Philadelphia’sMercy Health System and a neurology residentat Rutgers Robert Wood Johnson MedicalSchool. She is now a fellow at the BendheimParkinson and Movement Disorders Center.

Linn Katus, DODr. Katus did a University Hospital, Cincinnatiinternship and a NewYork-Presbyterian Hospital/Weill Cornell neurology residency.She is now a fellow at the Bendheim Parkinsonand Movement Disorders Center.

Inge A. Meijer, MD, PhD Formerly, a resident in child neurology at CHU Sainte Justine, Montreal University inCanada, Dr. Meijer is now a fellow at the Mirken Department of Neurology MovementDisorders Center.

Jeffrey Ratliff, MD Dr. Ratliff did his internal medicine internshipand was Chief Neurology Resident at University of Virginia Health System. He is now a fellow at the Mirken Department of Neurology Movement Disorders Center.

Jonathan Squires, MD A Co-Chief Resident in adult neurology at University of British Columbia Faculty of Medicine, Dr. Squires is now a fellow at theMirken Department of Neurology MovementDisorders Center.

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I have noticed an increase in my well-being since the programming began, and it continues to get better eachmonth.” Drew continues to golf, bike, compete in Half Ironmans, and play hockey. Thanks to DBS, this athlete isback in the game.

Raising Awareness ofParkinson’s and Making aDifference: Focus on What’s in Front of You!Drew’s dedication to PDawareness is an importantpart of his journey. His son, Jamie, and his friendscreated Bikes BattleParkinson’s (BBP) to raisemoney on behalf of theMichael J. Fox Foundation.

During one excursion, they rode 680 miles around Lake Ontario in five days. The following year, they rode fromToronto to New York, also in five days. DBS gifted Drew with arenewed appreciation for his physical abilities. “Those rideswere spectacular and challenging. It’s great to have the moti-vation and endurance to complete them.”

Drew remains committed to living his motto: “Focus on what’sin front of you and be a positive influence!”

Drew (right) with his son, Jamie

Physician Profiles

Deep brain stimulation (DBS) is a surgical treatment which uses an electrode implanted in a specific area or areas of the brain to controlsymptoms of movementdisorders including Parkinson’s disease, essential tremor, and dystonia.

The electrode implantedin the brain is connectedvia a wire to an implantablepulse generator (IPG) thatis placed under the skin of the chest. The electrode is then programmed to deliver a small electrical current to the brain area involved in causing the disabling symptoms.

Like many young women, SarahLederer, 30, is crazy about heelsand her hair. Unfortunately, thesymptoms of dystonia, a move-ment disorder that causes certainmuscles in the body to contract involuntarily, were interferingwith both those passions. Theolder she got, the more disruptivethe symptoms became.

“When I was a little girl, I hadproblems writing. My hands shooka bit and it made it very difficult to control the pencil,” explainsSarah. “My parents didn’t ignore it. In fact, they figured I had dystonia, and they were just grate-ful it was only affecting my writ-ing. The reason they correctlyguessed what I had was becausemy little brother had dystonia 10 times worse than me. Their attention was understandably centered on him.”

The Siblings Inherited the Same Gene, but Different Symptom SeverityIt turns out that both Sarah and her brother Gerard (four yearsher junior, now 26 years old) inherited a gene from their fatherthat predisposed them to dystonia. Genetic tests indicate thattheir father’s gene is inactive. Unfortunately, the siblings didn’tinherit that good luck. Both their versions of the dystonia genewere activated and the siblings were symptomatic.

Gerard’s symptoms were, in fact, so severe that he was wheelchair-bound by the time he finished elementary school. Desperate to help their son, the family, who lives in Middletown,New York, turned to Susan B. Bressman, MD, Chair of theMirken Department of Neurology Movement Disorders Center at Mount Sinai Beth Israel. When Gerard was 12 years old, he underwent deep brain stimulation (DBS, see page 5 for more).Today, Gerard lives a normal life—walking, driving, working. Infact, he just got married in September.

Indecision and Decisions Surround Sarah’s Debate About Undergoing Deep Brain SurgeryAt first, Sarah’s symptoms didn’t seem to warrant invasive surgery, but in her teens and young adulthood, the effects of herdystonia worsened. “My hands were becoming a real problem.

I had shaking and tremors andcouldn’t steady them. Then myankle started to be affected withthe muscle spasms,” she says. “Ihad trouble walking and startedlimping. At the time the anklestarted acting up, I was a fashionmarketing and management student at Berkeley College inWhite Plains. I loved dressing upand wearing heels, but before Ieven graduated, I had to switch towearing only flats. I was so upsetand I cried all the time,” she says. “I love fashion and the disease wascompromising the enjoyment of my career, as well as the function-ing of my life.”

Even though she had witnessed first-hand her brother’s successful

surgery, Sarah wanted to avoid deep brain stimulation. “I wasafraid. I didn’t like the idea of an implanted battery in my chest. I dreaded getting my head shaved for the surgery. I was afraid of being in pain during the recovery,” she says. “Yet I needed tocontrol my dystonia symptoms. I tried medications and injectionsinstead, but nothing worked.”

Four years ago, her doctors at Mount Sinai Beth Israel pointedout that the benefits of the deep brain surgery were beginning to outweigh the risks. Sarah reluctantly agreed, but she still delayed. “Finally, I couldn’t do it anymore. I was embarrassed towalk in front of other people, let alone walk in heels. Gerard’swedding was scheduled in the fall of 2015, so I figured I better do DBS early in the year so my hair could grow back in time!”

An Honest Take on the DBS Experience:What to Expect, the Challenges, and the Easier PartsSarah is refreshingly frank about her experiences with the DBSprocedure. Surgery, done by neurosurgeon Brian Kopell, MD,was three parts, starting in February 2015. The first two proce-dures implanted the electrodes in her brain. They were done amonth apart, the first on the right side, the second, on the left.“The surgeons wake you up during the operation and have youdo some exercises so they can make sure they are implanting theelectrodes in the right spot.” She says. “That was a little weird,because your head is secured in this vise, but nothing really hurtand I got to go home the next day each time.”

When the Benefits Outweigh the Risks: One Woman’s Search for the Best TreatmentSarah Lederer decided that dystonia was no longer going to hinder her youth. Despite her misgivings, she opted for life-changing surgery. Here is her story.

Patient Perspective

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Sarah getting programmed by Joan Miravite, nurse practitioner

Tips and Resources

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Preparing for your Next Visit to The Movement Disorders Centerby Julie Safar, LCSW

Here are some practical tips to make the most out of your nextappointment:

� Bring a LogWriting everything down will ensure that you have all the information to share during your visit. Keep a current log or list of all the medications and supplements you are taking, includingthe dosages. Write down all of the symptoms or medication side effects you have experienced since your last visit and, if applicable, when or under what circumstances the symptomsoccur. In addition, note anything new you are doing to manageyour symptoms, including exercise.

� Questions? Have Them ReadyIf you have questions, come prepared with a written list. It isimportant that you understand your diagnosis and treatment

fully and that you have open communication with your healthcare providers. It can be difficult to get in touch between appointments, so now is the time to ask those questions whenyou are sitting in the exam room. Don’t be shy!

Some questions to consider: • How will you monitor my treatment and who is involved in

my care?• What other professionals do you recommend that I see

(for example, physical/occupational/speech therapist, psychotherapist, social worker)?

• What are the latest developments in treatment? Are there any clinical trials appropriate for me?

• What hospital should I go to in an emergency? What should I tell them about my movement disorder and treatments?

• What can I do at home to help my treatment (for example, changes in diet, exercise, social activities)?

� Establish Goals for Your VisitMake sure you know what you came for and that you leave feeling satisfied with the answers and treatment provided.

� Inquire About Other ServicesYou may be referred to a social worker to help answer these questions, but ask what additional services are available to youand how you can access them. There are many services, agencies, resources, and educational information online or in-person that can benefit you, your family, and your treatmentprocess. You can learn about support groups, classes, webinars,educational events, and other resources to help you stay in control of your treatment.

� Don’t Go It AloneIf possible, ask a family member or friend to come with you. It canbe difficult to remember all of the information provided during anappointment. The person who accompanies you may remembersomething that you missed or forgot.

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CERVICALDYSTONIA OR SPASMODICTORTICOLLIS

Affects the neckmuscles

SPASMODICDYSTONIA OR LARYNGEALDYSTONIA

Affects the vocalcords

BLEPHAROSPASM

Affects the musclesaround the eyes

LIMB DYSTONIA

Affects the legs orfeet

LIMB DYSTONIA,WRITER’S CRAMPAND MUSICIAN’S DYSTONIA

Affects the hands or arms

DySTONIA is characterized by painful, prolonged musclecontractions that result in abnormal movements and postures.

For Sarah, the worst part of those two first steps was thatshe had to have a half of her head shaved each time. “Thatwas horrible,” she confesses. The third and last part of

the surgical interventioninvolved the surgeons implanting the chest device.“I went home the same dayafter this procedure, but itwas the most uncomfort-able. At least they didn’thave to touch my hairagain!” she says.

Six months since her sur-gery, Sarah is settled backinto a more carefree life.She has an online businessselling clothing, jewelry,and accessories, and hopes

to one day open up a retail shop. She and her brother bothcome to visit Joan Miravite, FNP, nurse practitioner at theMovement Disorders Center at Mount Sinai Beth Israel. Ms. Miravite adjusts Sarah’s programming to maximize andfine-tune the stimulation provided to Sarah’s brain so as toget the most symptom control possible.

Sarah is delighted with the results of DBS. “For my brother’swedding, I wore high heels and I was completely steady! My hair wasn’t quite perfect for the wedding, so I had hairextensions put in,” she says. “But, it’s growing back nicely!Now that DBS is over and my symptoms are resolving, it’slike a ton of bricks has been lifted from my shoulders.”

Gerard and Sarah as kids

OROMANDIBULARDYSTONIA OR MEIGE’S SYNDROME

Affects the lower facial and jaw muscles

Research: A call to patients, families, and friends

OBSERVATIONAL STUDIESGenetic and Imaging (no study drugs)

The Mirken Department of Neurology Movement Disorders Center at Mount Sinai Beth Israel is conductingthe following observational studies. If interested in any, andfor more specifics, contact deborah raymond at 212-844-8713or [email protected], or Brooke Johannes at 888-228-1688 or [email protected], unless otherwisespecified.

Key goals of our Parkinson disease (PD) genetic studies are to better understand the range and course of PD and to develop thebest possible biomarker battery for PD. This knowledge is a neces-sary foundation for future discovery and testing of vitally needednew medications for PD. The following two large studies (PPMIand U01) build on the knowledge we have gained from studyingour Ashkenazi patients and their families over the past years. Bothpreviously recruited and new participants are eligible. A specialnote to all Ashkenazi Jewish spouses and friends: We need you as well for these studies! The research depends on comparisongroups including people without PD, an important control group.

The Parkinson’s Progression Markers Initiative (PPMI):This multicenter worldwide research initiative is sponsored byThe Michael J. Fox Foundation for Parkinson’s Research and is designed to further explore biomarkers in genetic forms of PD. We are seeking Jewish patients with PD, as well as their close relatives and others if previously positive for PD-related genes(LRRK2 or a mutation in glucocerebrosidase, present in Gauchercarriers, see Gaucher Generations Program below). Participationincludes genetic counseling and testing for PD genes. If one familymember is found to carry a gene, other close relatives may enrollwithout learning the results of testing if they prefer not to knowthem. Participants who are eligible to continue in PPMI afterscreening will either enroll in the more intensive cohort arm ofthe study or the less intensive registry arm. Registry participantsare seen every two years, while cohort participants have study vis-its every six months, including yearly MRI and lumbar puncture,and DaTscan every two years. While some people are anxiousabout enrolling in the cohort, most find their fears allayed afterdiscussions with the study team, and feedback from participantshas been very positive. Susan B. Bressman, MD, is the PrincipalInvestigator.

The Biomarkers Study (U01): This study is funded by the NationalInstitutes of Health (NIH) and is designed to further explore PD biomarkers as part of the NIH Parkinson Disease Biomarker Program (PDBP). We are seeking Jewish PD patients and theirspouses, close relatives and friends who want to participate as

study controls. Participation includes a blood sample, a non-invasive brain ultrasound, a cognitive assessment, various motortasks, and personal and family history. You will be asked to repeat the visit at six-month intervals over the next two years.Although not required for the study, we ask our participants toconsider a lumbar puncture. Through a routine lumbar puncturewe can evaluate cerebral spinal fluid, which is the fluid thatbathes the brain, and most closely measures the environmentand substrates within the brain, and allows us to gather infor-mation we cannot obtain from a blood draw. Rachel Saunders-Pullman, MD, MPH, is the Principal Investigator.

Gaucher Generations Project: Research has shown that peoplewho suffer from Gaucher disease type 1 (GD1) may have an increased risk of developing PD. GD1 results from having twomutated copies of the GBA gene. While one mutated copy of theGBA gene does not cause GD1, it has been associated with ahigher risk of PD, Parkinson’s disease dementia, and dementiawith Lewy bodies. GBA mutations are commonly screenedamong the Ashkenazi Jewish population. We are reaching out tothose families affected by Gaucher disease or who know theycarry a GBA mutation, especially if there is an individual withPD in the family. Contact Imali Perera at 212-844-6055 or [email protected].

Dystonia Genetic Study: Together with numerous collaborators,we have made great strides, including identifying dystonia genes DYT1, DYT6, DYT12, and GNAL. There is still a great dealof work to be done. We are seeking dystonia patients to participatein genetic studies. Participation involves filling out paperwork,having a neurological exam, and giving a blood sample.

Dystonia Coalition Project: This international collaboration ofmedical researchers and patient advocacy groups has a missionto advance the pace of dystonia research to find better treatmentsand a cure. This study, sponsored by the NIH, aims to create aComprehensive Rating Tool for Cervical Dystonia. Participantsmust have a diagnosis of primary cervical dystonia and not haveany other significant dystonia in other parts of their bodies.Study visits will take around three hours. Participants are askedto answer questionnaires about their medical and family historyand current state of mind. A neurological exam will be video-taped and some blood will be drawn. Lawrence Severt, MD, PhD,is the Principal Investigator. Contact emily Muller [email protected].

Dystonia Partners Research Bank: This study, sponsored by theNIH, created through a partnership with Massachusetts GeneralHospital, seeks to build an organized collection of clinical infor-mation and biologic samples for future research on dystonia and other diseases. Researchers around the world will be able to

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use information and samples, which may lead to new tests and treatments. Participants will be asked to provide some medical history and background information, as well as a blood or tissuesample. Lawrence Severt, MD, PhD, is the Principal Investigator.Contact emily Muller at [email protected].

The Bendheim Parkinson and Movement Disorders Center at Mount Sinai is conducting the following observa-tional studies. If interested in any, and for more specifics, contact Christina alfonso at 212-241-2890 or ricardo renvill at 212-241-2220, unless otherwise specified.

Touch PD, a smartphone application study for PD patients:Do you suffer from PD, but forget to take your medications ontime? If so, you may qualify to participate in this study, whichevaluates how people living with PD can use the smartphone application myHealthPal to help manage medications, symptomsand general health. Participation is two weeks and consists of a baseline visit, a telephone interview at week one, and an end-of-study visit after two weeks. Ritesh Ramdhani, MD, is the Principal Investigator.

The Dystonia Coalition: The overall goal of this project is to develop a better understanding of dystonia to improve treatment.The project will collect clinical data for future studies that willhelp to understand the varied clinical manifestations, naturalhistory and development of dystonia. Rating scales are being created and a biospecimen repository is being developed. ContactJoan Bratton at 212-241-0279 or [email protected].

CLINICAL DRUG TRIALS

The Mirken Department of Neurology Movement Disorders Center at Mount Sinai Beth Israel is conductingthe following treatment studies. If interested in any, and formore specifics, contact emily Muller at [email protected] Severt, MD, PhD, is the Principal Investigator for these trials.

Apomorphine infusion in advanced PT patients: This study is enrolling advanced PD patients with off time (time when PDmedications aren’t working) that cannot be satisfactorily con-trolled with available medical therapy. Participation lasts about21 months, and eligible patients who enroll in the study will beeligible to continue receiving the drug until it is available inpharmacies or the study ends. The study is sponsored by USWorldMeds.

Study of extended-release amantadine for the treatment of levodopa-induced dyskinesia (involuntary movements) in PD patients: PD patients with dyskinesias who have undergone deepbrain stimulation are eligible for this Adamas Pharmaceuticals-sponsored study. Participation lasts about two years.

Study examining sublingual (under-the-tongue) apomorphine inlevodopa-responsive patients with PD complicated by motor fluctuations (off episodes): The objective of this study is to evaluate a new preparation of apomorphine in patients with PDover a 24-week period. We seek patients who receive stable doses of carbidopa-levodopa (sinemet) at least four times a day or Rytary three times a day. This study is sponsored by CynapsusTherapeutics.

Urate-elevating nutritional supplement, inosine, to slow clinical decline in early PD: We are seeking patients with a diagnosis ofPD made within the past three years who are not yet on levodopa/sinemet. This two-year study is sponsored by the Parkinson’sStudy Group.

Studies of MYOBLOC in the treatment of troublesome sialorrhea(drooling or excessive salivation): We are enrolling PD patients,as well as anyone who struggles with drooling from conditionssuch as stroke or amyotrophic lateral sclerosis, in one of two ongoing studies of Myobloc. Participation lasts between 26 and 52 weeks, and the studies are sponsored by Solstice Neuro-sciences.

Study to evaluate perampanel in subjects with primary cervicaldystonia: Those who have been treated with botox are not excluded from participation as long it has been at least eightweeks since their last injection before enrollment. This three-month study is sponsored by the Dystonia Study Group.

Assessment of sustained effects of droxidopa therapy in PD patients with neurogenic orthostatic hypotension (symptoms ofwhich may include dizziness, lightheadedness or the “feeling thatyou are about to black out”): This Lundbeck-sponsored study investigates whether the FDA-approved drug Northera (alsoknown as droxidopa) is effective for longer than two weeks. Participation lasts up to 36 weeks.

Outpatient physical therapy intervention in PD patients with motorfluctuations currently using APOKYN: This six-week study willinvestigate the effects of physical therapy intervention in PD patients with motor fluctuations. The study is sponsored by USWorldMeds.

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10

Support Groups

Ataxia (Tri-State Area Group)Free open group discussion. Please RSVP to [email protected] or [email protected]. Facilitators: denise Mitchell and Kathy Gingerelli

November 12, January 14, March 10, May 126:30 – 8:30 pm Mount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanSecond Floor Levy Conference Room 3

Deep Brain Stimulation Free open group discussion for patients whohave already had DBS. Please RSVP to 212-844-6134 or [email protected]: Joan Miravite, NP

March 291 – 3 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanFifth Floor Levy Conference Room 5K04

Deep Brain Stimulation Candidacy Open to patients and family members lookingto find out more information about DBS formovement disorders. Free lectures, opengroup discussion, and panel discussion. Please RSVP to 212-844-6134 or [email protected]: Joan Miravite, NP

april 121 – 3 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanFifth Floor Levy Conference Room 5K04

Dystonia (NYC Adult Group) For adults with dystonia. Free lectures andopen group discussion. Please RSVP to 212-844-6134 or [email protected]. Facilitator: Joan Miravite, NP Patient Moderator: Pam sloate ([email protected])

November 18 (Clinical Trials and research indystonia with lawrence severt, Md, Phd),January 20, March 1, april 26 6 – 8 pm Mount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanFifth Floor Levy Conference Room 5K04

Essential TremorFree lectures and open group discussion. Please RSVP to 212-673-8207 or [email protected]: Margaret Mackey

November 5, december 3, January 7, February 4, March 3, april 7, May 5, June 21 – 3 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanFifth Floor Levy Conference Room 5K04

Parkinson’s DiseaseFree open group discussion. Please RSVP to212-241-8297 or [email protected]: Julie safar, lCsW

November 19, december 1710:15 – 11:15 amThe Mount Sinai Hospital1468 Madison Avenue, ManhattanAnnenberg Building, 20th Floor, Room 201(Guggenheim Pavilion; middle East elevators.)

Parkinson’s Disease (Manhattan Group) Free open group discussion. Please RSVP to 212-844-8482 or [email protected]. Facilitator: sheree loftus, Phd

November 12, december 10, February 11,March 10, april 14, May 12 2 – 4 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanFifth Floor Levy Conference Room 5K04

Parkinson’s Disease (Men’s Group) Free lectures and open group discussion. Please RSVP to 212-844-6134 or [email protected]: Joan Miravite, NP


Parkinson’s Disease(Movers and Shakers Group)For people who are still working. Free open group discussion. Please RSVP to 212-844-8482 or [email protected]: sheree loftus, Phd

October 29 (T’ai Chi), November 19, december 10, February 25, March 31, april 28, May 26 6:30 – 8 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanFifth Floor Levy Conference Room 5K04

Parkinson’s Disease (Central Queens Y Group)In partnership with Central Queens Y, a free, quarterly support group for peoplewith PD and/or their caregivers. For information, contact 718-268-5011 x160 [email protected]: Bendheim Parkinson and Movement disorders Center staff

October 2711:45 am – 12:45 pmCentral Queens Y67-09 108th Street, Forest Hills

Parkinson’s Disease (Young Onset Group)For people diagnosed before 55. Free. PleaseRSVP at 212-844-8482 or [email protected]: sheree loftus, Phd

November 12, december 10, Feburary 11,March 10, april 14, May 12 6:30 – 8 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanFifth Floor Levy Conference Room 5K04

Parkinson’s Disease Caregivers Free open group discussion. Please RSVP to212-241-8297 or [email protected]: Julie safar, lCsW

November 19, december 1711:15 am – 12:15 pmThe Mount Sinai Hospital1468 Madison Avenue, ManhattanAnnenberg Building, 20th Floor, Room 201 (Guggenheim Pavilion; middle East elevators.)

Parkinson’s Disease CaregiversFree open group discussion. Please RSVP to 646-335-2600 or [email protected]: rita Golub, lCsW


11

Classes and Workshops

Chair YogaJoin this gentle class designed to help peoplewith Parkinson’s disease, dystonia, and othermovement disorders. Emphasis on flexibility,coordination, facial movement, voice, balance,and gait. Free. Registration required at 212-844-6134 or [email protected]: roberta schine, CKYI

Weekly on Tuesdays3:15 – 4:30 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanSecond Floor, Conference Center, Room 1

Hand Yoga Manage the stress focused on the hands. This workshop will provide strengthening exercises, a soothing hand massage, handwriting exercise, and meditation. You will leave with a lesson plan to help you at home. Free. Registration required at 212-844-6134 or [email protected]: roberta schine, CKYI

November 5, december 3, January 7, February 4, March 3, May 5, June 23:15 – 4:30 pm Mount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanSecond Floor, Conference Center, Room 1

Meditation for Stress Reduction

Introduction to simple, easy-to-learn techniques such as body scan, breath, candle,loving kindness, and visualization to help youbegin to relax, focus, and reduce the stress.Free. Registration required at 212-844-6134 or [email protected]: roberta schine, CKYI

October 26; November 2, 9, 16, 30; december 7, 14; January 4, 11, 25; February 1, 8, 22, 29; March 7, 14, 21, 28;May 2, 9, 16, 2312:30 – 1 pm Mount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanSecond Floor, Conference Center, Room 1

PEP! Parkinson’s Exercise Program

Developed by Karin L. Ruhe, 92Y May CenterGroup Exercise Coordinator, in collaborationwith and supported by the Bendheim Parkinson and Movement Disorders Center at Mount Sinai. A gentle group exercise classemphasizing stability, strength, gait preser-vation, motor coordination, and balance improvement. Participants must be able toclimb a short flight of stairs. Price is $144 per 8-class session. Registration is availablefor Monday and/or Wednesday classes. You must register for both classes if you wish to participate two days per week. Call 212-415-5722 for more information and toschedule an interview.Instructor: Carolyn Perkins

Monday sessions: september 28 – November 16; November 23 – January 11

Wednesday sessions: september 30 – November 18; November 25 – January 13

1:30 – 2:25 pm92nd Street Y1395 Lexington Avenue, ManhattanCardio Court Studio, Fourth Floor

Balance Work (Reducing Your Risk of Falls)Learn a routine of 12 easy, gentle yoga exercise designed to help improve balance and decrease your risk of falling. Includes suggestions on how to make your environmentsafer, strengthen your bones, choose properfootwear, and deal with inclement weather, as well as what to do if you fall. Free. Registration required at 212-844-6134 or [email protected]: roberta schine, CKYI

October 26; November 2, 9, 16, 30; december 7, 14; January 4, 11, 25; February 1, 8, 22, 29; March 7, 14, 21, 28;May 2, 9, 16, 23 11 am – 12:15 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanSecond Floor, Conference Center, Room 1

T’ai Chi Simple, effective movement routine thatbrings vital energy. No special clothing is required. Free. Registration required at 212-844-6134 or [email protected]: Carolyn Perkins

Weekly on Thursdays6:15 – 7:15 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanSecond Floor, Conference Center

Voice Yoga Learn simple and fun yoga exercises to helpyou communicate better by strengtheningyour vocal cords and learning to articulateand speak louder. Free. Registration requiredat 212-844-6134 or [email protected]: roberta schine, CKYI

November 3, 10, 17; december 1, 8, 15; January 5, 12, 19, 26; February 2, 9, 16, 23;March 1, 8, 15, 22; May 3, 10, 17, 24, 315 – 6 pmMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanFifth Floor Levy Conference Room 5K04

Lectures

Latest Advances in Essential TremorSpeakers: Lawrence Severt, MD, PhD, neurolo-gist, and Brian Kopell, MD, neurosurgeon.Free; lunch will be provided. RSVP required at212-844-6134 or [email protected].

October 25registration at 11:30 amlecture begins at 12 pm (noon)Mount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanSecond Floor Conference Center, Auditorium

Latest Advances in Dystonia Speakers: Naomi Lubarr, MD, neurologist, and Brian Kopell, MD, neurosurgeon. Free;lunch will be provided. RSVP required at 212-844-6134 or [email protected].

November 15registration at 10 amlecture begins at 10:30 amMount Sinai Beth IsraelPhillips Ambulatory Care Center (PACC)10 Union Square East, ManhattanSecond Floor Conference Center, Auditorium

About the 2013 Merger: Facts and Figures Here is a snapshot of what the Mount Sinai Health System looks like.

Newsroom

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MOVEMENT DISORDERS NEWS Send us your input and feedback at:[email protected].

Robert and John M. Bendheim Parkinson and Movement Disorders Center at Mount Sinai5 East 98th Street, Box 1138First FloorNew York, NY 10029-6574212-241-5607http://www.mountsinaihealth.org/patient-care/neurology

Alan and Barbara Mirken Department of Neurology Movement Disorders Center atMount Sinai Beth IsraelPhilip Ambulatory Care Center (PACC)10 Union Square East, Suite 5HNew York, NY 10003212-844-6134http://www.mountsinaihealth.org/patient-care/neurology

The Mirken Department of Neurology Movement Disorders Center is designated as a Center of Excellence by:• The Bachmann-Strauss Dystonia & Parkinson Foundation • The National Parkinson Foundation

In September 2013, Mount Sinai andContinuum Health Partners combinedto form the Mount Sinai Health System.Since then, we have built on the strengthsof both institutions to create a healthsystem that stands as a national andglobal model of academic, clinical, andresearch excellence.

The Mount Sinai Health System pro-vides the highest quality health carethroughout the New York metropolitanarea. Our integrated resources and expertise offer patients comprehensivecare from birth through geriatrics, including complex cases. This newly established system significantly expandsour geographic footprint and increasesour number of operating rooms to 135.

The Mount Sinai Health System consists of: • Icahn School of Medicine at • Mount Sinai• Mount Sinai Beth Israel • Mount Sinai Brooklyn • The Mount Sinai Hospital • Mount Sinai Queens • Mount Sinai Roosevelt • Mount Sinai St. Luke’s • New York Eye and Ear Infirmary of • Mount Sinai.

The Mount Sinai Health System is an integrated health system committed toproviding distinguished care, conductingtransformative research, and advancingbiomedical education. Structured aroundseven hospital campuses and a singlemedical school, the Health System hasan extensive ambulatory network and arange of inpatient and outpatient serv-ices, from community-based facilities totertiary and quaternary care.

The System includes approximately6,100 primary and specialty care physi-cians; 10 minority-owned free-standingambulatory surgery centers; more than140 ambulatory practices throughoutthe five boroughs of New York City,Westchester, Long Island, and Florida;and 31 affiliated community health cen-ters. Physicians are affiliated with therenowned Icahn School of Medicine atMount Sinai, which is ranked among thehighest in the nation in National Insti-tutes of Health funding per investigator.

The mission of the Mount Sinai HealthSystem is to provide compassionate patient care with seamless coordinationand to advance medicine through unrivaled education, research, and out-reach in the many diverse communitieswe serve.

Research(continued from page 9)

The Bendheim Parkinson andMovement Disorders Center at Mount Sinai is conducting the following clinical drug trials. If interested in any, and for morespecifics, contact Joan Bratton at 212-241-0279 [email protected].

Open-label safety study of Ads-5102(amantadine Hcl) extended-releasecapsules for the treatment of levodopa-induced dyskinesia in PDpatients: Patients who have partici-pated in the Adamas 301 study andpatients who have undergone deepbrain stimulation are eligible for the study. This study is for two years and is sponsored by Adamas Pharmaceuticals.

Phase 3, randomized, double-blind,placebo-controlled study investigat-ing the efficacy and safety of CVT-301(levodopa inhalation powder) in PDpatients with motor response fluctua-tions (off phenomena): This multi-center study involves a plannedtreatment period of 12 weeks. Eachpatient will self-administer up tofive doses of inhaled study drug perday as an added treatment duringtheir off periods while taking theirusual PD drugs. Patients who suc-cessfully complete the study will beoffered the opportunity to consentto a long-term (12-month) treatmentextension study.

Open-label, phase 3 study examiningthe long-term safety, tolerability, and efficacy of APL-130277 in levodopa-responsive patients withPD complicated by motor fluctua-tions (off episodes): Patients whotake L-Dopa/carbidopa at least four times a day or Rytary threetimes and experience “off ” days areeligible. The objective of this study is to evaluate the safety and tolerabil-ity of APL-130277 in patients withPD over a 24-week period.The study is sponsored by CynapsusTherapeutics.

If you want to opt out of receiving this newsletter, please contact 212-241-5607 or [email protected] we will remove your name from our mailing list.

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