Schedule


7:30-8:00AM  
Registration & Sign-in

8:00-8:15         
Welcome
Kathleen Ackroyd & Rene Jones
Co-Chairs, New England Connective Tissue Disorders Symposium

General Session/Keynote Speakers


8:15-9:15        
Vascular Connective Tissue Disorders: New Insights from Basic Science
Hal Dietz, M.D.
Victor A. McKusick Professor of Medicine and Genetics
Investigator, Howard Hughes Medical Institute
Director, William S. Smilow Center for Marfan Syndrome Research
Institute of Genetic Medicine
Departments of Pediatrics, Medicine, and Molecular Biology & Genetics
Johns Hopkins University School of Medicine, Baltimore, MD


9:15-10:15      
Medical Cannabis
Dustin Sulak, D.O.
Integrative Medicine
Healer, Founder & Medical Director, Falmouth, ME
Expertise: osteopathy, mind-body medicine, medical cannabis


10:15-10:30    
Break

10:30-11:30   
Clinical Genetics: Marfan Syndrome, Ehlers-Danlos Syndrome, Pregnancy & Prenatal Diagnosis
Aubrey Milunsky, M.D., D.Sc, F.R.C.P., F.A.C.M.G., D.C.H.
Founder and Co-Director, Center for Human Genetics
Adjunct Professor of Obstetrics and Gynecology, Tufts University School of Medicine
Formerly Professor of Human Genetics, Pediatrics, Obstetrics and Gynecology, and Pathology
Boston University School of Medicine
Center for Human Genetics, Cambridge, MA

11:30-12:00   
Ask the Experts Q & A
Drs. Dietz, Sulak & Milunsky

12:00-1:00      
Lunch
Lunch is not provided. The Roosevelt room is reserved for folks to socialize while eating lunch. We hope you'll join us! 


1:00-4:00
Afternoon Workshops
Workshops will be offered during the afternoon session. When registering you will be asked to select your top three choices for workshops and one alternate from the available topics below.  Workshops will be filled on a first come first served basis.  If one of your workshops is full we will do our best to place you in your alternate workshop choice.

Ehlers-Danlos Syndrome and other CTD's: Optimizing Management to Improve Quality of Life
Jeff Milunsky, M.D., F.A.C.M.G.
Co-Director, Center for Human Genetics, Inc., Cambridge, MA
Director, Clinical Genetics
Senior Director, Molecular Genetics
Board certified: Clinical Genetics, Clinical Molecular Genetics, Pediatrics (previously)


Acupuncture
Elizabeth Ropp, Licensed Acupuncturist
Community Acupuncture
Manchester Acupuncture Studio, Manchester, NH

                        
Cannabis 101
Krista Brack
Patient & Advocate
Rhode Island EDS & CTD Support Group Leader


Chiropractic Management of Pain and Promotion of Health
Keith J. Zimmermann, D.C., C.C.S.P.
Zimmerman Chiropractic & Wellness Center, Manchester, NH
 Education: honor graduate of New York Chiropractic College, specializing in sports injury repair as well as general family practice; B.S. degree in Biology and General Sciences from Cortland State University; degree in Medical technology from St. Peter's Hospital in Albany, NY
Expertise: 30+ years of chiropractic experience, nutrition, muscle and soft tissue treatments, management of sports injuries

Manifestations and Oral Care in Connective Tissue Disorders
Dr. Mabi Singh, D.M.D., M.S.
Associate Professor & Associate Director
Oral Medicine Service


GI Issues and Safety of Colonoscopy Screenings
Dr. Jacqueline Wolf
Associate Professor of Medicine
Division of Gastroenterology, Harvard Medical School, Beth Israel Deaconess Medical Center, Boston, MA
Foodicine Health, Founder
Expertise: inflammatory bowel disease, women's gastrointestinal health, gastrointestinal symptoms in Marfan & Ehlers-Danlos syndromes


Growing Older
Heather Bean & Kaddy Ackroyd
Patients & Advocates

Medical Insurance and Disability
Kathleen Kane, Attorney
Social Security Disability Appeals Attorney
Jon Rodis
Ehlers-Danlos & CTD New England/Massachusetts Support Group Leader
EDS & Marfan Physician Awareness Committees, Founder
Disability Advocate for Rare Disorders
Medical Advocacy for Rare Disorders


Communicating with Healthcare Providers
Angela Shepard, M.D., M.P.H.
Preventive Medicine
Medical Advisor, NH EDS Coalition

Connective Tissue Disorders and the Eye
Theodor C. Sauer, M.D., M.P.H.
Ophthalmologist
Ophthalmic Consultants of Boston, Boston, MA
Specialties: cataract, glaucoma
Research fellowships: National Eye Institute, National Institutes of Health - Fogarty International Center

Prepping for Perioperative Success
Amanda Aikulola, L.P.N.
Peri-operative & Endoscopy Nurse
Patient Advocate

Dysautonomia Support Network, Founder & Executive Director, RI

Marfan and Loeys-Dietz Q&A
Ron Lacro, M.D.
Director, Cardiovascular Genetics Clinic, Boston Children's Hospital
Assistant Professor of Pediatrics, Harvard Medical School
Boston, MA

Yoga
Sarah
Yoga Instructor

Pain Management
Dr. Pradeep Chopra
Interventional Pain Management Center of RI, Director, Providence, RI
Board Certified: Pain Management, Anesthesiology

Special Interests: Complex Regional Pain Syndrome (CRPS), Reflex Sympathetic Dystrophy (RSD), collagen disorders such as Ehlers Danlos Syndrome (EDS)

Physical Therapy (*This workshop is being offered at 10:30-11:20 as well as in the afternoon.)
Dr. Lesli Bell, P.T., D.P.T., C.L.T.-L.A.N.A.
Timberlane Physical Therapy, Winooski, VT
Expertise: lymphedema, cervical & lumbar spine, headaches, traumatic instability issues, TMJ disorders, connective tissue hyper-mobility syndromes including Ehlers-Danlos and Marfan syndromes
Lesli has lectured internationally on complex patient care.
Lesli co-developed the Bellisse Compressure Comfort Bra to meet the needs of breast cancer patients with trunk and breast lymphedema.

Jennifer Simpson, P.T., O.C.S.
Timerlane Physical Therapy, Winooski, VT
Expertise: Gait mechanics, bracing and taping for optimal stability and function, myofascial release and gentle manual treatment for alignment and tone reduction, connective tissue and hyermobility syndromes, safe sport and exercise participation for people with instability and hypermobility
Board Certified: Orthopedic Clinical Specialist

Support Group for Mothers
Erin Donato & Brenda Shisslak
Patient, Family & Caregiver Advocates

Support Group for Unaffected Spouses
Stephanie Amdur-Clark

Therapeutic Cannabis: Patient Support
Wendy Thomas
Advocate

Transitioning from Pediatric to Adult Care
Dr. Michael Singh
Co-Director, Adult Marfan Syndrome/Connective Tissue Disorder Clinic; Inpatient Director, Boston Adult Congenital Heart/Pulmonary Hypertension Program; Cardiovascular Genetics Program, Boston Children's Hospital, Boston, MA
Assistant Professor of Pediatrics, Harvard Medical School
Board certified: Pediatrics, Internal Medicine, Internal Medicine Adult Congenital Heart Disease, Internal Medicine Cardiovascular Disease

Why Your Mindset Is More Powerful Than Your Illness
Cara Sachs
Certified Professional Life Coach, Patient & Advocate
Cara Sachs Coaching
You are NEVER powerless, even if your health issues are genetic and degenerative. This presentation will help you understand why and how your thoughts have a powerful PHYSICAL impact on your body and symptoms. This information will empower you to increase the balance in your energy “bank account” by identifying the areas to invest in that will give you the biggest energy boost, while cutting off thoughts that keep draining your “account”.

Connective Tissue and Pediatric Cardiology Concerns: What to Consider
Nancy Drucker, M.D.
Pediatric Cardiologist, University of Vermont Medical Center
Associate Professor, Larner College of Medicine
Inpatient Consultant, University of Vermont Children's Hospital
Burlington, VT

Osteoarthritis and EDS
Dr. Alicia Zbehlik
Rheumatology
Dartmouth Hitchcock Medical Center, Lebanon, NH

Living Quality Lives: EDS, LDS & MFS
Micah Amdur-Clark, Peter Donato & Abby Shisslak
Patients & Advocates

 


Children's Program
Game room and activities are available for children ages 5-12. Advance registration is required for the Children’s Program.  Children will be supervised so parents may attend General Session and Workshops while their children make new friends and have fun!  Snacks and beverages will be provided. Please alert us at time of registration if your child has food allergies.

Teen Room
There will be a conference room where your teen (ages 13-19) may join other teens, listen to music, play games, hang and meet other teens should they want a break.  Snacks and beverages will be provided.  Please let us know at time of registration if you have food allergies or sensitivities.

Friday Night Meet & Greet
Join us on September 21st in the Hospitality Suite for light refreshments and beverages from 6:30-8:30PM.


Registration Rates

By September 5, 2018
Adults $40
Teens (13-19 years old) $20
Children (5-12 years old) $10

After September 5, 2018
Adults $55
Teens $35
Children $20


Overnight Stay
We have secured a room block at The Best Western Plus Executive Court Inn and Conference Center located at 13500 S. Willow St., Manchester, New Hampshire 03103. Tel#:603-627-2525.  So come and enjoy the beauty of the Fall Foliage in New England!
•Group Name: NE Connective Tissue Disorders
•Room Rates:  $119 a night single/double; $129 a night triple; $139 a night quad
•The Best Western offers a complimentary shuttle from Manchester Regional Airport from 5am to 11pm.

Lunch
Lunch is not provided. Backyard Brewery is a close and convenient option. It's located next to the Best Western.

Questions or Concerns
If you have a special need, please contact Rene Jones at rene@connectivetissuesymposium.org. 

Topics and presenters are subject to change.