Here’s a great way to welcome the new year: our Wellstone Center Family Day at the University of Massachusetts Medical School in Worcester! There will be loads of great information shared – including everything from the latest research updates, to ways we can help our bodies feel better while living with FSHD. We want to give our community the resources to tackle FSHD from every angle in the new year!
Keep scrolling down for our exciting agenda, speaker profiles, and detailed directions for how to meet us all there – we can’t wait to see you!
Refreshments will be served – Please RSVP today to help us plan for this fabulous time together!
Wellstone Center / U Mass Medical
Albert Sherman Center Building, room AS1-2310
368 Plantation St
Worcester, MA 01605
Parking is on the first floor of the First Road Parking Garage, although other floors are ok if the first floor is full.
Turn from Plantation street onto South Road. Take the first left toward the garage and then take a right to enter the first floor of the garage. Walk out of the garage and towards the revolving door of the Sherman center. To the right of the revolving door is a regular door that should be unlocked. Walk straight through that door, the meeting room is the first room on the left.
If you have any trouble finding the meeting, please reach out to Chapter Director Kristin Zwickau, at: 617.285.1197.
11:15-11:30 FSHD Society: opening statements
11:30-11:45 Charlie Emerson: intro to UMMS Wellstone
11:45-12:10 Rabi Tawil gives update on natural history study and clinical trial readiness
12:10-12:30 Larry Hayward: UMMS FSHD clinic
12:30-1:45 Exploratory Panel Discussion around Pain management during Lunch:
Massage/Pilates/CBD discussion- taking care of muscles and keeping motion
1:45-2:30 Fulcrum – Lucienne Ronco
2:30-2:50 Katelyn Daman: lead FSHD therapeutic candidates being developed at UMMS Wellstone
2:50-3:00 closing remarks
3:00 – 4:00 – Open Networking
About the speakers:
Charles P. Emerson, Jr., Ph.D.: Director
The Director of Core A and Wellstone MD CRC is Charles P. Emerson, Jr., Ph.D. Dr. Emerson is Professor of Neurology at the University of Massachusetts Medical School. He is an internationally recognized developmental biologist for his research on skeletal myogenesis and muscular dystrophy. He has been the recipient of NIH Career Development and Merit Awards and two NIH training grants. Dr. Emerson will serve as the UMMS Wellstone MD CRC Director as well as the lead investigator in myoblast cell culture and xenograft disease modeling studies to understand the cellular pathology of FSHD and develop FSHD therapeutics. UMMS Faculty Profile
Dr. Tawil is co-Director of the MDA Neuromuscular Disease Clinic at the University of Rochester. He is also Director of the Neuromuscular Pathology Laboratory and is responsible for the interpretation of all muscle biopsy samples use for diagnosing muscle diseases. His clinical interests include all acquired and inherited muscle diseases, myasthenia gravis and amyotrophic lateral sclerosis. He has special expertise in facioscapulohumeral muscular dystrophy (FSHD), the non-dystrophic myotonias and the periodic paralyses.
Dr. Tawil’s current research interest in focused on FSHD and he is leading an international collaborative effort to understand the underlying molecular mechanisms in FSHD and work towards treatments to slow progression and improve strength in FSHD. Dr. Tawil also participated in a number of research studies that helped identify the genetic cause for the different forms of periodic paralysis. More broadly, Dr. Tawil is interested in bringing new treatments to neuromuscular disorders and has participated and helped organize numerous neuromuscular treatment trials.
Dr. Larry Hayward
Dr. Lawrence Hayward, M.D., Ph.D. is Professor of Neurology at UMMS. His role in the Center is Director of the UMMS FSHD clinic, which is a source of FSHD patients and families for muscle biopsy and blood to contribute to studies of FSHD disease modifiers. Dr. Hayward has research expertise in neuromuscular disease and cell and animal disease modeling. UMMS Faculty Profile
Katelyn Daman, Ph.D.
Katelyn is a postdoctoral researcher in Charlie Emerson’s lab at UMass Medical School where her main focus is to create a therapy for FSHD. She is working to develop cell and animal models which can be used in preclinical FSHD drug development studies. She is currently collaborating with several companies and colleagues in the RNA Therapeutics Institute at UMass to advance lead therapeutic candidates.
Fulcrum – Lucienne Ronco
Vice President, Translational Medicine
Lucienne Ronco joined Fulcrum at the company’s launch in 2016. She brings more than 17 years of industry experience in translational medicine, drug discovery, biotechnology and pharmaceuticals. Prior to joining Fulcrum, Lucienne was a director within the Center for the Development of Therapeutics at the Broad Institute of MIT and Harvard. Prior to her work at the Broad Institute, she was president of research at Catabasis Pharmaceuticals. Previously in her career, Lucienne worked for 10 years at AstraZeneca Boston, where she held positions of increasing responsibility, including global director of translational medicine; local director for the departments of in vivo pharmacology, informatics and disease area research; and the breast disease team scientific lead. Prior to AstraZeneca, she was a senior research investigator at the Pfizer Discovery Technology Center. Lucienne holds a Ph.D. in biological chemistry from the University of California, Los Angeles and completed postdoctoral research at Harvard Medical School.
Megan Baxter Barrow fell in love with pilates from her first session on mat and the rest is history. She started her journey as instructor while working as a consultant in Boston and later transitioning into teaching full time. It took a lot of time and dedication, but she knew it was all worth it. Today she works at various fitness clubs through the city teaching mat, barre, and equipment sessions. Her true love is her studio located at 50 Terminal Street Building 2 Unit 715 where she works with Charlestown residents and other local Bostonians to train on the equipment.
Her studio includes two reformer/tower combination systems, 3 wall towers, 3 pilates chairs, 1 trapeze table and numerous props and smaller equipment. The equipment and intimate setting allows Megan to tailor workouts to individuals, even with a duet or semi-private group (3-4 people) to challenge you at each session. She has worked with various types of clients ranging from everyday fitness to injury rehab (back, shoulder, hip, etc.), pre/post-natal, adolescents, special populations (cancer, scoliosis, osteoporosis, and muscular dystrophy) and other fitness instructors. One of her favorite things to circulate in her sessions is the use of the jump board on the reformer. It adds a cardio component without stress on the joints making jumping fun.
Megan obtained her comprehensive pilates certification through Balance Body, which includes mat, reformer, trapeze table, chair, and barrels. She has continued her pilates education obtaining her Pre/post-natal Pilates specialist and Pilates for Neuroscience designations. In addition, she holds her personal training certification through National Academy of Sports Medicine and is a licensed TRX instructor. She attends workshops with master trainers such as Shari Berkowitz, Karen Clippenger and Eric Franklin to name a few to keep growing and learning as instructor to bring the best results to her clients.
Johanna Gorton is a bodyworker and functional movement specialist with 15 years of experience in Reiki and integrative massage. In addition, she holds specialty certifications for kinesiology taping, Craniosacral therapy, and NeuroKinetic therapy. Utilizing knowledge of each of these modalities during sessions, Johanna helps each individual client address their own unique needs and works the body on multiple layers to relieve conditions such as TMJ and carpal tunnel syndrome, as well as low back, knee, and neck pain. She works in the areas of: Integrative Massage, Neuromuscular therapy, Myofascial Release, Pre-/Post-natal, Hot stone, Craniosacral Therapy, NeuroKinetic Therapy, Kinesiology/Athletic taping, and Reiki II.
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