BDSRA Annual Conference
“Fire Up A Cure”
July 9 - 12, 2015
Chicago IL
2015 Conference Program
Overview of Conference Program
Thursday, July 9
Registration for both the conference and research studies opens at noon. For the golfers – meet-up in the morning for a day on the links. Families new to the conference are invited to an hour orientation at 6:30 p.m. for an overview of weekend activities. The popular Sibs Event at 7 p.m. welcomes unaffected siblings of all ages. At 7:30, the Welcome Reception sets the scene for seeing old friends and meeting new ones.
Friday, July 10
The morning session welcomes attendees to Columbus and provides a research overview. After lunch, the Sibs group heads out for their first outing and those who lost loved ones to Batten disease meet for their trip to a local attraction. The afternoon includes sessions on symptom management, social media awareness, grief management and a session for grandparents and extended family. The trivia game offers entertainment following dinner.
Saturday, July 11
Families can participate in a Q&A session with researchers, followed by separate break-out sessions for moms and dads to discuss issues specific to their form of Batten. Insights from researchers provide relevant updates on the science of the various forms of Batten disease. Therapy dogs delight as they mingle with affected children and Sibs. The Research Open House and poster session provides details about various research processes, as well as one-on-one discussions with the scientists.
In the afternoon, separate break-out sessions for mothers and fathers of children with INCL, LINCL and an unknown form give them the opportunity to talk about matters related to these disease forms. An expert panel of a nurse, doctor and education specialist allows people to ask questions and catch up on some information they may have missed while attending earlier concurrent sessions. Otherwise, the afternoon is open to explore and enjoy Columbus before the dinner banquet.
Sunday, July 12
A non-denominational prayer and memorial service is held to remember those lost to this heart breaking disease. For new families, there is a decompression session with a psychologist to help process their weekend experiences. We then say our “farewells" and “until next year.”
Detailed Conference Program
Subject to change
Thursday, July 9
8am-4pm: Golf Outing
8am-5pm: Board of Directors Meeting
Noon-6pm: Conference Registration and Scientific/Medical Studies Registration (for research, diagnosis, carrier testing)
6:30-7:30pm: New Family Orientation provides an overview of conference events and introduction of “Buddy Families” who help answer questions and navigate the weekend
7-9pm: Sibs Event
7:30-9:30pm: Welcome Reception brings together all attendees to meet and mingle before conference business begins
9pm: Sibs 18 and older head meet up
9pm-Midnight: Hospitality Room Open
Friday, July 10
7:45-8:45am: Breakfast
8am-Noon: Childcare for affected children, with attending nurses
10-10pm: The Batten Disease Memorial Wall is on display throughout the weekend for reflection and remembrance
8:30-9:00am: Sibs group meets for introduction and ice-breaking activities
9-10am: Sibs Group Break-Out Sessions – designated age groups have a chance to meet with the scientists and ask questions
9:00-11:30am: Opening Session
Research Overview - Presented by:
~ David Jacoby, MD, PhD, Senior Medical Director and Group Leader for Neuroscience, BioMarin Pharmaceutical Inc.
~ Ron Crystal, MD, Professor and Chairman of the Department of Genetic Medicine of the Weill Cornell Medical College of Cornell University
~ Erika Augustine, MD, University of Rochester Medical Center
9am-5pm: Blood Draws (for research, diagnosis and carrier testing)
Organized and facilitated by Liz Donohue, Director, Coordination of Rare Diseases at Sanford
10:15-11:30am: Sibs meet again by age groups for facilitated discussions and activities – Facilitators include:
Colleen Heath, MEd, special needs teacher for 35 years, currently teaching at the Ohio State School for the Blind
11:30-12:30pm: First Time/Newly Diagnosed Session - Joe Vigil, PhD, a private practitioner and rehabilitation psychologist with the Southeast Louisiana Veterans Health Care System, leads this session for families new to conference and Batten disease, to learn about care and case management for their affected children.
11:30-Noon: Life Goes On Meet & Greet – Chicago BDSRA Chapter leaders welcome and introduce bereaved family members before they leave for their afternoon outing
Noon-1:30pm: Lunch
2-7pm: Sibs Outing and Dinner
1-5pm: Life Goes On Outing
1-5pm: Childcare for affected children
1:30-3:15pm Concurrent Sessions:
Symptom Management: A multidisciplinary look at caring for your affected child
Speakers:
~ Katherine Sims, MD, Director of the Massachusetts General Hospital Developmental Neurogenetics and Mitochondrial Disorders Clinic, Director of the MGH NCL Disorders Clinic
~Kristen Drago, RN, BSN, CHPPN, Manager of the pediatric palliative and hospice care program for JourneyCare of Children
Facebook can be your friend, or not: Using social media to advance awareness while keeping your family safe
Speakers:
~Beth Bauer, MSW
~Melissa Rapp
3:30-4:45pm: Concurrent Sessions:
Grandparents/Extended Family Session
Speakers:
~Dorothy Chervinko
~Carol Curry
~Susan Cotman, PhD, Assistant Professor of Neurology at Harvard Medical School and Assistant in Neuroscience at the Massachusetts General Hospital
Am I the only one feeling this way? Navigating the new normal
Speakers:
~Lori Yosick, LISW-S, Executive Director, Evergreen Hospice and Palliative Care, Mt. Carmel Health Systems, Columbus, OH
~Doug Cluxton, MA, LPC, Bereavement Counselor, HomeReach Hospice, Kobacker House, Ohio Health, Columbus, OH
5:30-10:30pm: Baseball outing – Columbus Clippers vs Norfolk
6:00-7:30pm: Dinner
9:00-11:00pm: Trivia
10pm-Midnight: Hospitality Room Open
Saturday, July 11
7:45-8:45am: Breakfast
8am-Noon: Childcare for affected children & 2-5 year olds
9:00-10:30 am: State of the Science for Infantile, Late Infantile, Kufs & Variants – Speakers include:
~ Jonathan Cooper, PhD, Profession of Experimental Neuropathology at The Institute of Psychiatry at King's College London
~ Susan L. Cotman, PhD, Instructor of Neurology, Harvard Medical School, Assistant in Neuroscience, Massachusetts General Hospital
~ Sandra Hofmann, MD, PhD, Professor, Internal Medicine, Molecular Genetics, University of Texas Southwestern Medical Center
~ Tammy Kielian, PhD, Professor, College of Medicine, Department of Pathology and Microbiology, University of Nebraska Medical Center
~ Mark Sands, PhD, Associate Professor of Medicine, Division of Oncology, Section of Stem Cell Biology, Washington University School of Medicine
9am-5pm: Blood Draws (for research, diagnosis and carrier testing)
9am-10am: Sibs of all ages enjoy some canine time with Therapy Dogs and their handlers
10-11:30am: Age-designated Sibs art project
10-11am: Affected children get a delightful visit from some furry friends with guest Therapy Dogs and their handlers.
10:45-Noon: Sib/Parent Panel is an opportunity for parents and their unaffected children to have a conversation about family dynamics with a member with Batten disease
10:30-11:45am: Research Open House – learn about various research processes and have one-on-one discussions with the scientists and open poster session
Noon-1:30pm: Lunch
1-5pm: Childcare for affected children
1-5pm: Sibs Outing
2:00-4:00pm: INCLs LINCLs Unknown Moms Session / INCLs LINCLs Unknown Dads Session
Separate sessions for mothers and fathers of children with these two forms. Parents can share experiences and frustrations, as well as offer and receive support and ideas to help on this journey.
1:30-4:30pm: Meeting of Medical Advisory Board and Scientific Advisory Board
1:30-5pm: Hospitality Open
5-6pm: Preparation for the Kid’s Parade – The affected kids get decked out in themed accessories for this special event
6-6:30pm: Kid’s Parade - Affected children are announced and escorted by their siblings as they make their way into the dining room under thunderous applause!
6:30-8pm: Banquet and Presentation - Recognition of those whose volunteerism positively impacts the Batten disease community. .
8-11pm: Sibs Dollar Dance & DJ Music – This Sibs fundraiser is a family favorite. The DJ will encourage everyone to crowd the dance floor for a rockin’ time and sentimental journey.
8pm-Midnight: Hospitality Room Open
Sunday, July 12
7:45-8:45am: Breakfast
8:30-11:30am: Childcare for affected children
9-11:15 am: Prayer and Memorial Service
This reflective ceremony honors the memories of loved ones lost to Batten disease. Everyone is welcome.
9:45-11:15am: First Time/Newly Diagnosed Families Decompression – Joe Vigil leads this session where people are encourage to discuss their impressions from the weekend and thoughts about the future, as well as offering caregiver and caregiving support.
11:30am: Farewells