OCTOBER 23, 2015 BOSTON HARBOR HOTEL A Night with the Arts for FTD
Walk on the Dark Side by Sybil Sermos Inaugural Gala & Art Show to benefit The Frontotemporal Disorders Unit Massachusetts General Hospital
www.ftd-boston.org
[email protected] From To Care Cure
Photography by Joshua Touster Welcome from Brad Dickerson, MD
October 23, 2015 I am delighted to welcome you to the first MGH FTD Unit Gala, “A Night With the Arts for FTD.” We are inspired tonight by Kemon and Sybil Sermos and others like them who continue to strive to maintain art as a central force in their lives – and as a magnet to galvanize our community – despite the challenges posed by FTD and related brain disorders. In addition to the inspiration we will enjoy from joining together for this special evening, we hope that tonight will help raise funds for new and expanding initiatives in our programs of FTD Care Today and FTD Research for a Cure. The first prong of our work focuses on trying to provide the best FTD Care Today. We feel good about what is being done now, but we always strive to expand and improve. We are delighted that Katie Brandt officially joined our team in summer 2015 as a Community Resource Specialist and look forward to her efforts to develop more training courses, support resources, and other connections to services in the community that can help provide essential physical and psychological lifelines to patients and families living with these conditions today. Aphasia therapy, music therapy, and specialized patient/caregiver support groups are only some of the new initiatives we are planning to launch with seed funds from events like this one. The second prong of our work aims to advance FTD Research for a Cure. I am tremendously excited about the possibilities and opportunities in our research portfolio today. I will show images tonight of some of the pathologies of FTD in the brain—seen for the first time in living people—and of models of these conditions in the lab. We desperately need these new tools and technologies which are the bricks and mortar of the foundation for the development of new treatments. We have seen time and time again how seed funds for new pilot projects like those generated tonight are able to kickstart larger programs that will be supported by major medical foundations and the National Institutes of Health. I can’t thank you enough for participating in tonight’s mission to raise the bar in our efforts – as the largest FTD clinical and research program in New England – to improve FTD Care Today and expand FTD Research for a Cure.
“I’m confident that if we all continue to dedicate ourselves to working together as a team, we will move the research forward toward a cure.” Bradford C. Dickerson, MD – Brad Dickerson, MD Director, MGH Frontotemporal Disorders Unit Associate Professor of Neurology, Harvard Medical School Featured Artists – Kemon & Sybil Sermos Frontotemporal Disorders Unit Staff
Janet Sherman, Ph.D is Chief Neuropsychologist at Massachusetts General Hospital and Clinical Director of the MGH Psychology Assessment Center. She is a specialist in adult and child clinical neuropsychology. She has specific interests in language disorders and in the neurocognitive changes and behavioral changes associated with neurodegenerative disorders as well as in other acquired neurological disorders. Dr. Sherman serves as the neuropsychologist for the MGH Memory Disorders Unit and the MGH Frontotemporal Dementia Unit. Barbara Hawley-Maxam, LSW, is Social Worker for the MGH Memory Disorders Unit and the MGH Frontotemporal Dementia Unit. She provides emotional support to patient’s family members and directs families and patients to community resources. She also co-leads an Alzheimer’s Caregivers’ Support Group.
Clinical Fellows Jaya Padmanabhan, MD is a fellow in the McLean / MGH Behavioral Neurology and Neuropsychiatry program. She works with Dr. Dickerson in the MGH FTD Unit. Her research interests include neuropsychiatric genetics, imaging, and psychosis in the setting of neurological disease. She is a graduate of the Harvard Longwood psychiatry residency training program and Harvard Medical School.
Alessandro Biffi, MD is a part of the FTD Unit through his fellowship in Behavioral Neurology and Neuropsychiatry at Massachusetts General Hospital. He is currently conducting NIH-funded research investigating the role of vascular risk factors in cognitive impairment and psychiatric disorders. Dr. Biffi also has a special interest in precision medicine aspects of prevention and treatment in cognitive neurology, including personalized risk determination and integrated use of genomics, imaging and advanced statistical techniques. Joel Salinas, MD is a member of the FTD Unit through his research and clinical fellowship in Behavioral Neurology and Neuropsychiatry at Massachusetts General Hospital. His research focuses on investigating psychosocial predictors and modifiable risk factors of age-related neurologic disease and its sequelae using large epidemiologic cohorts. His long-term goal is to develop and deploy interdisciplinary strategies to prevent the development of devastating chronic brain disease. Ryan Darby, MD is a Behavioral Neurology and Neuropsychiatry fellow who sees patients at the FTD Unit at MGH. He is interested in the diagnosis View Kemon & Sybil’s work in tonight’s art show. A portion and management of social and moral behavioral abnormalities in FTD of the proceeds from tonight’s sales will be donated by patients and is currently working with Dr. Dickerson to develop novel Kemon & Sybil to the MGH Frontotemporal Disorders Unit. behavioral and neuroimaging assessments of social behavior. He also is interested in the application of non-invasive brain stimulation to measure differences in neural plasticity in FTD and other neurological patients. e To Featured Artists – Kemon & Sybil Sermos From Car Cure Kemon and Sybil Sermos are experts at exploring new cultures and navigating unchartered territory. “We have traveled to 65 countries and six continents together. Our art has allowed us to travel and our travel has inspired our art,” says Sybil. Their home is a bright mosaic of that inspiration. Beautiful paintings, photo albums bursting with stories and a wall tiled with photos of grown children, grandchildren and great-grandchildren are the illustrations of a life well lived. As their story continued to unfold, a new journey began when Kemon was diagnosed with Frontotemporal Degeneration in 2012. With no set itinerary and little knowledge of the landscape, Kemon and Sybil set out to find an expert guide and found themselves at the Frontotemporal Disorders Unit at MGH. They were now members of a new community, ready to learn and contribute. Early in 2015, the idea for a gala and art show to benefit the FTD Unit was born when Kemon and Sybil spoke to Dr. Dickerson during a clinic appointment. The seasoned travelers saw and opportunity to forge a new path for other donors and families who wanted to make a difference and a course was set. When asked why fundraising for Dr. Dickerson was so important, Sybil remarked “How many artists in their lifetime have the opportunity that we have had to find someone like Dr. Dickerson? To find someone who has impressed us and is doing work that is important to us, work that we can contribute to? We are inspired to do more, and that is a wonderful thing.” Tonight’s art sale showcases works by Kemon and Sybil. A portion of the proceeds will directly benefit the FTD Unit. Each sale made with the intention of igniting hope for today’s care and tomorrow’s cure. Sybil says “whatever joy this brings to the person who buys it, they also help in the cause to Dr. Dickerson. It is called giving back. That is what this is all about.”
Find out more about how you can become a voice for (L to R) Megan Quimby, Katie Brandt, Brad Dickerson, Christina Caso, FTD and the research happening in the Dickerson Lab by Barbara Hawley-Maxam, Sara Makaretz, Michael Stepanovic, Bedia Samanci, emailing [email protected] Alexander Zaitsev Frontotemporal Disorders Unit Staff
Elena Ratti, MD, MMSc is an Instructor in Neurology at Harvard Medical School and within the MGH Neurology Department. She is affiliated with the MGH Neurological Clinical Research Institute (NCRI) and the MGH Amyotrophic Lateral Sclerosis (ALS) Unit and the FTD Unit Clinics. Her research is aimed at improving the understanding of the ALS-FTD continuum longitudinally with clinical and neuroimaging assessments. Dr. Ratti was the 2014 Dr. Anne B. Young Neuroscience Translational Medicine Fellow, a joint training program between Biogen and MGH Neurology. Diane Lucente, MS, CGC is a Senior Research and Clinical Genetic Counselor in the MGH Center for Human Genetic Research. She provides clinical care to patients and families with neurodegenerative and neurodevelopmental conditions. She is involved in research that focuses on determining the underlying causes for many neurodevelopmental and neurodegenerative conditions.
Daisy Hochberg, MS, CCC-SLP is a speech-language pathologist at MGH who provides evaluation and treatment services that aim to facilitate functional communication for patients and their families with progressive language disorders. She has worked in Dr. Bradford Dickerson’s Laboratory at the MGH FTD Unit since 2007 and her research has focused on the development of a scale to measure the presence and severity of language symptoms in this patient population. Megan Quimby, MS, CCC-SLP is a speech-language pathologist at MGH who provides evaluation and treatment services that focus on facilitating functional communication to patients with progressive language disorders. She helps run a PPA Education and Support Group and conducts research on progressive language disorders in Dr. Bradford Dickerson’s Laboratory at the MGH FTD Unit.
Affiliated Faculty Stephen J. Haggarty, Ph.D is an Associate Professor of Neurology at Harvard Medical School, an Associate Neuroscientist at Massachusetts General Hospital, and Director of the Chemical Neurobiology Laboratory within the MGH Center for Human Genetic Research. Of particular interest to Dr. Haggarty’s laboratory has been the generation, characterization, and use of patient-derived stem cell models for understanding the molecular and cellular basis of FTD. In collaboration with members of the MGH FTD Unit and others, Dr. Haggarty’s efforts are contributing to the discovery of targeted therapeutics for the treatment and prevention of FTD. “I treasure the opportunity to work one-on-one with each person with FTD to assess the ways the illness affects that individual and their family, and to try to treat the problems.” – Brad Dickerson, MD Inaugural Gala Program
Cocktail Hour Art Show Opens Silent Auction Opens Classical Music Performance
Welcome and Introductory Remarks Brad Hyman, MD, PhD Director, Massachusetts Alzheimer’s Disease Research Center
Dinner
Tribute to Kemon & Sybil Sermos Cynthia Rozzi “Dickerson lab’s work is important for guiding patients and Sermos Family Friend caregivers in navigating an otherwise confusing and very inadequately understood disease.” Introductory Video - Michael Brickhouse, Research Assistant Katie Brandt, MM Community Resource Specialist, Frontotemporal Disorders Unit
FTD Unit Staff & Trainees Live Auction: Premier Auction Items Frontotemporal Disorders Unit Presentation: From Care To Cure Application Developer Patient Services Coordinator Brad Dickerson, MD Alexander Zaitsev Nordia McBean Director, Frontotemporal Disorders Unit
Community Resource Specialist Postdoctoral Fellows Live Auction: Fund A Need Katie Brandt Jessica Collins Chenjie Xia Music & Dancing Graduate Students Musical Performance by “After Hours” Claire Cordella Research Assistants Lee Richardson Michael Brickhouse Please note the Silent Auction will close at 9:30PM Christina Caso Neurology Resident Katie Kelly Closing Remarks Bedia Samanci Sara Makaretz Michael Stepanovic Frontotemporal Disorders Unit Staff
Special Guest Bradley T. Hyman, MD, PhD directs the Alzheimer’s Disease Research er Spon Unit at the MassGeneral Institute for Neurodegenerative Disease (www. Silv sor mghmind.org), with the goal of understanding the neuropathophysiologic and genetic factors that underlie dementia. His laboratory studies the anatomical and molecular basis of dementia in Alzheimer’s Disease and dementia with Lewy bodies. Dr. Hyman is the recipient of the Metropolitan Life Award, the Potamkin Prize, a National Institute on Aging MERIT award, and an Alzheimer Association Pioneer Award. He has been the Director of the Massachusetts Alzheimer’s Disease Research Center since 2006. FTD Unit Faculty Bradford Dickerson, MD is the Director of the Massachusetts General Hospital Frontotemporal Disorders (FTD) Unit and Neuroimaging Lab. He is also a staff behavioral neurologist in the MGH Memory Disorders Unit and co-investigator on the Neuroimaging Core of the Alzheimer’s Disease Research Center. He is an Associate Professor of Neurology at Harvard Medical School. Dr. Dickerson runs a busy weekly clinic caring for patients with various forms of cognitive impairment and dementia, as well as providing training for clinical and research fellows. His research employs quantitative structural and functional neuroimaging techniques to investigate dementias as well as normal aging. Scott McGinnis, MD is a board-certified neurologist and instructor in Neurology at Harvard Medical School with expertise in evaluation and treatment of patients with cognitive impairment and dementia. His research interests include FTD, atypical presentations of Alzheimer disease and non-Alzheimer neurodegenerative dementias. He is an investigator in the Center for Alzheimer Research and Treatment at BWH and the MGH FTD Unit. Mark Eldaief, MD is board certified in both Neurology and Psychiatry. He went on to do a research fellowship in Cognitive Neurology at the Beth Israel Deaconess Medical Center and now serves on the staff of the MGH FTD Unit. Clinically, Dr. Eldaief is most interested in the behavioral variant of Frontotemporal Dementia. His research focuses on intrinsic brain activity as captured by resting-state fMRI. He also FORUMPHARMA.COM uses multimodal techniques, including the combination of Transcranial Magnetic Stimulation (TMS) and PET scanning to study frontal brain networks involved in mood regulation. David Perez, MD is a dual trained staff neurologist and psychiatrist in the MGH FTD Clinic. Dr. Perez has a clinical interest in neuropsychiatric features of FTD and works closely with members of the Dickerson Laboratory to investigate brain-symptom relationships in FTD using neuroimaging techniques. r
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to laugh and live in the face of FTD. S This gift is given in love and support of Barbara the extraordinary person that she was and continues to be. We are extraordinary person that she was and continues to be. We Brandt for the endless hours she has given to all of us in FTD community. This is a horrible disease but the friendships we have community. led by Amy, Barbara, John, and Katie has helped us to still be able led by Amy, built and especially the “corner club” in our monthly support group thankful for the help, support, guidance, and love shown from Katie www.ftd-boston.org The Frontotemporal Disorders Unit at MGH The Frontotemporal Our Frontotemporal Disorders (FTD) Unit is a comprehensive clinical-research unit committed to sophisticated, compassionate, are focused on interdisciplinary care of patients. We Frontotemporal Degeneration and related disorders including FTD, Primary Progressive Aphasia, Semantic Behavioral Variant Dementia, Corticobasal Degeneration Syndrome, Progressive atypical forms of Posterior Cortical Atrophy, Supranuclear Palsy, and FTD-ALS. Alzheimer’s Since our inception in 2007, we have been proud to offer a speech pathology, wide array of services including neurology, social work, genetic counseling and psychiatry, neuropsychology, testing services, and caregiver support. Our staff clinicians are dedicated to fighting back against FTD by improving the quality lives and partnering with families to engage in of our patient’s we can hope to one cutting edge research. By working together, day live in a world where FTD can be cured and prevented. Bronze Sponsors
The Kearney Family Given With Love in Honor of Rosemary from John, Connor, Noreen & Bridget
The Khouri Family In Honor of our Husband, Father, Grandfather, Brother, Friend Donald E. Khouri
The Landau Family In Loving Memory of Sheldon Landau, Beloved Husband, Father, Poppy and Friend
The Millerick Family Given With Love & Support for Joanne from Bob, Lindsay & Lauren
The Radosta Family Given With Love for our Husband, Dad, Grampy and Friend, John In his words, “I love you, you’re so beautiful!”
The Family of Jerry Regan Beloved Husband, Dad, and Friend. You fought the fight with courage, dignity, and humor. We’re honored to help find a cure.
The White Family In support of Dennis, our Husband, Dad, and Grumpa. We Love You!
Friends of the FTD Unit
Lorrie Gibris-Parajeckas Brandt & Marie Henderson A Special Thank You to Tonight’s Volunteers
Harvard College Alzheimer’s Buddies Program Harvard College Alzheimer’s Buddies (HCAB) is a student organization responding to the profound isolation and social disengagement experienced by people in the intermediate-to- late-stages of Alzheimer’s Disease. Students build meaningful connections with dementia residents during weekly one-on-one visits. Students focus on what is still present in their buddies and improving the life that they have despite limitations. HCAB volunteers currently visit patients at the Hebrew Senior Life Rehabilitation Center.
To Learn More, Go To: www.alzheimersbuddies.org
Inaugural Gala Planning Committee Members
The MGH FTD Unit is committed to providing the best care for Amy Almeida Brandt Henderson people with Frontotemporal Disorders Beth Almeida Katie Kelly Katie Brandt Myra Landau Christina Caso Christy Regan Brad Dickerson Cynthia Rozzi Liz Elefante Sybil Sermos This dynamo team brought us all together for tonight’s celebration with amazing energy, commitment and dedication. The FTD community is grateful for all of the time and love you have put into this year’s event.
Follow us on Facebook to view photos and video from tonight and get info for next year’s gala! www.facebook.com/ftdunitgala Live & Silent Auction Donors A Special Thank You to Tonight’s Woodwind Trio
Scott Almeida Nancy & Craig Gibson Arnould Gallery & Framery The Grafton Group Aline Benoit – Clarinet Ball Square Café Somerville Pam Greene Boston Pops Esplanade Orchestra Aline Benoit Janet Lambert-Moore Andrea Bonsignore – Oboe Bits and Pieces The Late Show With Stephen Colbert Boston Pops Esplanade Orchestra Boston Center for Oral Health Lyndell’s Bakery Boston Pops Orchestra Legal Seafoods, LLC Suzanne Nelsen – Bassoon The Boston Red Sox Solveig Makaretz, Trosko Boston Symphony Orchestra Beverly Brody Barisano Frank Massabni Silvana Bruno The Neighborhood Restaurant The Butterfl y Place North Shore Music Theatre Tonight’s performance donated in honor of their The Capital Grille Overlook CARE beloved friend and fellow musician Laura Ahlbeck Gwindale Cassidy Marie Peters Barbara Colburn Raso’s Grille & Pizzeria Susan Culpo The Regan Family Brenda Curry Ritz Carlton Hotels, Boston Common Danversport Yacht Club Roland’s Jewelry Jean Delibero Ruth Scholler Marilyn Dwyer Kemon & Sybil Sermos Eagle Photography Ava Simione Faux Designs Simon Z Designs Fiamma Glass Studio
Supporting Donors
Andrew’s Bakery Home Helpers Constance Archambault Debbie Howell Nancy Barry Carrie Ingraham Frank & Chris Boyer Gregory Kerwood Bridgewater Print & Copy Love Is Out There Barbara Caldarone Mad Dog Construction Philip Caplin Katherine Mendzela Robert Ciccariello Patricia Moran Mary & Brian Day Barbara Neufeld Michael Day Richard Ranti Paul & Pat Dowd Jack Sloyan Michelle Griffin Sarah Tipton Alan Holbrook With grateful appreciation for the ongoing support from our donors