NOTE: TENTATIVE CONFERENCE PROGRAM;
SUBJECT TO CHANGE
Batten Disease Support & Research Association
2013 Annual Family Conference Program
* Sibs-specific programs highlighted in Yellow
Thursday, July 18
8am-4pm:Golf Outing
8am-5pm:Meeting of the Board of Directors
Noon-6pm:Conference Registration and Scientific/Medical Studies Registration (for research and carrier testing)
1-5pm:Blood Draws (for research and 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 Pool & Pizza Party – need we say more? (Lifeguards will be on duty)
7-9:30pm: Welcome Reception brings together all attendees to meet and mingle before conference business begins.
9pm: Sibs 18 and older head out for some Nashville hospitality.
9pm-12am:Hospitality Room Open; join in the Texas Hold’Em Poker Tournament.
Friday, July 19
7-8:15am: Breakfast(meal ticket required)
(coffee, decaf coffee, donuts, whole fruit, orange juice)
8am-Noon: Childcare - separate facilities for 2-5 year olds and for affected children, with attending nurses.
10am-9pm: The Batten Disease Memorial Wall is on display throughout the weekend for reflection and remembrance.
8:15-9:00am:Sibs Groupmeets for introductions and ice-breaking activities.
8:30-9:00am: Opening Session - The Tennessee Chapter graciously welcomes all, the Sibs Group introduces its program, and BDSRA’s Executive Director shares the past year’s important milestones as well as exciting new directions.
9-11:00am:Research Overview - Presented by Chris Leonard, PhD, Science Officer, Batten Disease Support and Research Association, and Danielle Kerkovich, PhD, Principal Scientist, Beyond Batten Disease Foundation.
Clinical Trial Updates, followed by an informal focused Q&A session – Presenters include:
Ronald G. Crystal, MD, Chairman & Professor of Genetic Medicine, Weill Cornell Medical College
David Jacoby, MD, PhD, Senior Medical Director, BioMarin Pharmaceutical Inc.
Erika F. Augustine, MD, Child Neurologist, University of Rochester Medical Center
9-10am:Sibs Group Break-Out Sessions – designated age groups have a chance to meet with scientistsand ask questions. Researchersparticipating include:
Rose-Mary Boustany, MD, American University of Beirut
Jonathan Cooper, PhD, The Institute of Psychiatry, King’s College London
David Pearce, PhD, Sanford Children’s Health and Research Center
Friday, July 19 (continued)
9am-3pm:Conference Registration Open
9am-5pm:Blood Draws (for research and carrier testing)
10:15-11:30am:Sibs meet again by age groups for facilitated discussions and activities – Facilitators includeColleen Heath, MEd, special needs teachers for 35 years, currently teaching at The Ohio State School for the Blind, and older and experienced siblings offering guidance to younger children.
11am-Noon:First Time/Newly Diagnosed Families Session - Joe Vigil, PhD, a parent of an affected daughter, and 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.
11-11:30am:Life Goes On Meet & Greet - Sherry and Randy Hatchett welcome and introduce bereaved families members before lunch and their trip to the Country Music Hall of Fame and Museum.
Noon-1pm:Lunch(meal ticket required)
(corn and black bean salad, chicken fajitas, crispy beef tacos, refried beans, jack cheese, cilantro rice, salsa, sour cream, cheddar cheese)
1:15-6:30pm:Sibs Outing and Dinner at the Nashville Zoo at Grassmere (followed by activities in the Hospitality Room until7:30 pm).
1-5pm:Life Goes On Outing at the Country Music Hall of Fame
1-5pm:Childcare for affected children & 2-5 year olds
1-2:15pmConcurrent Sessions:
Symptom Management I – Katherine Sims, MD, Director of the Massachusetts General Hospital Developmental Neurogenetics and Mitochondrial Disorders Clinic, discusses understanding symptoms and seizure control.
Ask a Nurse – Kristen Drago, RN, BSN, CHPPN of Hospice and Palliative Care of Northeastern Illinois, will provide information on how palliative and hospice services can help in the care of your child.
Positioning and Handling Children with Batten Disease: How to prevent further complications - This session led by Teresa Plummer, PhD, MSOT, OTR, ATP, CAPS, with the School of Occupational Therapy at Belmont University, and Sarah Haverstick, CPST, Safe Children Program Manager, Monroe Carell Jr. Children’s Hospital at Vanderbilt, will review body mechanics for the caregiver, as well as present optimal positioning for the client to prevent further neurological or orthopedic complications.
2:30-3pm:Ice Cream Social – a tasty break from the July heat!
3:15-4:30pm:Concurrent Sessions:
Symptom Management II – Come with your symptom management questions and concerns to discuss with Dr. Sims. Also during this session, Dr. De Los Reyes and Dr. Leowald from Nationwide Children’s Hospital will address sleep problems of those affected with Batten disease.
Fundraising for Batten Disease– Julie Conry, MA, BDSRA, Senior of Director of Advancement & Outreach, and Chris Hawkins, BDSRA Board member, build excitement for raising money for BDSRA’s important programs of research and support, followed by a Q&A session.
Positioning and Mobility: A demonstration of products and devices - DME and NuMotion representatives Andy Foster, MSOT, ATP, and Renee Waddell, PTA, ATP, will be available to answer questions regarding a variety of wheelchairs, bathing and positioning products.
Grandparents/Extended Family Session– Facilitated by Dorothy Roberts Chervinko and Carol Curry, grandparents of affected children, this is a place for people closely involved with the family to share their concerns and experiences with others who truly understand. Dr. Susan Cotman joins the discussion to answer questions regarding research.
Friday, July 19 (continued)
3:15-4:30pm:Q&A on JNCL Medical Care & Management – Take part in a discussion led by Jonathan W. Mink, MD, PhD, Chief of Child Neurology, University of Rochester School of Medicine and Dentistry, and Erika F. Augustine, MD, Child Neurologist, University of Rochester Medical Center.
4:30-6:00pm:BDSRA Board Meet & Greet and Chapters Meeting–Attendees are invited to chat with board members and staffto share ideas and goals, followed by a meeting with Chapter representatives.
6:30-7:30pm:Dinner (meal ticket required)
(freshly baked rolls, butter, garden salad, vinaigrette dressing, chicken piccata, lemon caper sauce, herb orzo pasta, broccoli, chocolate cake)
8-11pm:An hour-long FamilyConcert for all ages, followed by the beloved trivia game, provide entertainment after dinner.
10pm-12am:Hospitality Room Open
Saturday, July 20
7-8:15am:Breakfast (meal ticket required)
(coffee, decaf coffee, assorted muffins, jelly, butter, whole fruit, orange juice, warm egg and cheese breakfast burritos, salsa)
8am-Noon: Childcare for affected children & 2-5 year olds
8:30-9:45am:State of the Science – Discussion facilitated by member of BDSRA’s Scientific Advisory Board. Learn about the latest, promising advancements in Batten disease.
9am-Noon:Conference Registration Open
9-10am:Bereavement Sessionfor Sibs- Kristen Drago, RN, BSN, CHPPN, of Hospice and Palliative Care of Northeastern Illinois, will facilitate this session for Sibs ages 12 and up who have lost their sibling(s) to Batten disease.
9-10am:Sibs of all ages enjoy some canine time with therapy dogs and their handlers.
9-10:30am:Meditation Workshop - Gordon Peerman, DMin, is a psychotherapist in private practice, as well as an adjunct faculty member at Vanderbilt Divinity School, and Karen Pilkerton, RN, has more than 10 years in mindfulness training, and is a member of the Insight Meditation Group.
10am-9pm:The Batten Disease Memorial Wall is on display for reflection and remembrance.
10-11am:Affected children and the 2-5 year olds get a delightful visit from some furry friends with guest therapy dogs and their handlers.
10-11:15am: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.
10-11:30am:The Sibs Grouppartakes in some creative, hands-on activities when The Frist Center for the Visual Arts brings the art experience to the conference.
10-11:45am:Research Open House& Poster Session– Learn about various research processes and have one-on-one discussions with the scientists.
10:45am-Noon:JNCL Session for Parents –This discussion is for parents of children with this form to share experiences and challenges, as well as offer and receive support and ideas to help on this journey. Facilitating this session are Gordon Peerman,DMin,a psychotherapist in private practice, as well as an adjunct faculty member at Vanderbilt Divinity School, and Karen Pilkerton, an RN with more than 10 years in mindfulness training and a member of the Insight Meditation Group.
Noon-1:30pm:Lunch (meal ticket required)
(Caesar salad, croutons, Parmesan cheese, spaghetti, meatballs, vegetarian lasagna, garlic cheese bread, roasted oregano zucchini, sweet onions)
1-5pm:Childcare for affected children & 2-5 year olds
Saturday, July 20 (continued)
1:30-5pm:Sibs Outing to Nashville’s Adventure Science Center
1:30-2:45pm:INCLLINCL Sessionfor Parents – This discussion is for parents of children with these two forms to share experiences and challenges, as well as offer and receive support and ideas to help on this journey. Facilitating this session are Gordon Peerman,DMin,a psychotherapist in private practice, as well as an adjunct faculty member at Vanderbilt Divinity School, and Karen Pilkerton, an RN with more than 10 years in mindfulness training, and a member of the Insight Meditation Group.
1:30-2:45:Caring for Your Affected Child at Home & School– Kristen Drago, RN, BSN, CHPPN, of Hospice and Palliative Care of Northeastern Illinois, and Colleen Heath, MEd, The Ohio State School for the Blind, offer helpful ideas to care and advocate for your affected child’s lifetime.
1:30-4:30pm:Meeting of Medical Advisory Board and Scientific Advisory Board
1:30-5pm:Free Time – Checkout all that Nashville has to offer or hang out with your peeps at the pool.
1:30-5pm:Hospitality Room Open
5-6pm:Free Time 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:BanquetProgram(meal ticket required)– Evening attire? Festive, dressy casual for this fun family event.
(freshly baked rolls, butter, house salad, buttermilk ranch dressing, grilled flat iron steak, house steak sauce, baked potato, butter, sour cream, chives, roasted vegetables, red velvet cake)
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-12am:Hospitality Room Open
Sunday, July 21
7-8:30am:Breakfast (meal ticket required)
(coffee, decaf coffee, orange juice, whole fruit, scrambled eggs, breakfast potatoes, crisp bacon, grits, cheddar cheese, oatmeal, raisins, brown sugar)
8:30-11:30am: Childcare for affected children & 2-5 year olds
9-11:15 am:Non-Denominational Prayer and Memorial Service
This reflective ceremony honors the memories of loved ones lost to Batten disease. Everyone is welcome, however, only attend if you’re comfortable.
9:45-11:15am:First Time/Newly Diagnosed Families Decompression Session– Joe Vigil leads this session where people are encouraged to discuss their impressions from the weekend and thoughts about the future, as well as offering caregiver and caregiving support.
11:30am:Farewells