2017 Family Conference Program
Subject to change
Thursday, July 6
8:00am-4:00pm: Golf OutingQuicksilver Golf Club,Midway PA Meet in Main Lobby
Coordinated by Randy Royalty
8:00am-4:30pm: Board and Planning MeetingsBenedum
Noon-8:00pm: Conference Registration and Scientific/Medical Studies Registration Ballroom Foyer
6:30-7:30pm:Grandparent/Extended Family Happy HourBirmingham
6:30-7:30pm:New Family MixerBatten parents Brock and Ellie Benroth and BDSRA staff welcome families attending their first conference and provide an overview of conference eventsGrand Ballroom 4
7:00-9:00pm:Sibs Indoor Picnic and GamesGrand Ballroom 1
7:30-9:30pm:Welcome ReceptionLight snacks and a cash bar will be availableKings Garden 4 and 5
9:00pm-Midnight:Texas Hold’Em Poker TournamentGrand Ballroom 3
9:30-11:00pm:Adult SIBS meet up (21+)
Friday, July 7
8:30am-6:00pm: Conference Registration Open Ballroom Foyer
7:45-8:45am: Breakfaston your own
8:30am-Noon:Batten Kids Care Brigade, Rivers, Traders
8:30am-Noon: Teddy Bear Club for children ages 2-5 Chartiers
9:30-11:00am: Opening Session and Keynote Speaker30 years in review: Celebrating our past and looking
towards our future. BDSRA welcomes Merril Hoge, ESPN commentator and former player for the Pittsburgh Steelers and the Chicago Bears. Merril will share his inspirational outlook from his memoir Find A Way.(Coffee, tea, and water will be provided)Grand Ballroom 2
11:00am-Noon: First Time/Newly Diagnosed SessionJoe Vigil, PhD, a bereaved parent, private practitioner,
and rehabilitation psychologist, will facilitate this session for families new to our conference
and Batten disease.Grand Ballroom 4
10:00am-10:00pm: The Batten Disease Memorial is on display throughout the weekend for reflection and
remembrance. Kings Garden 1
Noon-1:00pm: Founders Celebration Lunch(meal ticket required) Join us in paying tribute to those families, researchers and community members who have been here since the very beginning.
Grand Ballroom 1
1:00-5:00pm: Life Goes On Outing for those parents who have lost a child to Batten disease; a tour of Pirates stadiumMeet in Main Lobby Coordinated by Larry Killen
1:00-5:00pm:Batten Kids CareBrigade, Rivers, Traders
1:00-5:00pm: Teddy Bear Club for children ages 2-5 Chartiers
1:15-2:15pm Concurrent Sessions:
Grandparents/Extended Family SessionFamily members share their experiences with their peers and partake in a Q&A process led by Hedda Rublin from TDC Consulting, BDSRA’s strategic planning partner. Attendees will share their insights, learn from each other and confidentially, and help BDSRA plan for the future by contributing the unique and valuable viewpoint of a grandparent, aunt, uncle, or person closely involved with Batten families. Kings Garden 3
Stress, Coping and Wellness for CaregiversMelissa Turner leads this session that will cover
stress in the body and mind, and what you can do to alleviate it.A brief lecture and light movement will be included to bring some TLC to you - the Caregiver! Kings Garden 4
Symptom ManagementPhysicians from our Centers of Excellence will be on hand to address questions parents and caregivers have about caring for children and adults with Batten disease. Kings Garden 5
2:30-3:30pmConcurrent Sessions:
How to Tell Your Story from the Grocery Store to Capitol HillThere are so many options when talking about how Batten disease has impacted your family, where to begin. This session will provide a framework to talk about your child and your family's experience, and be a confident communicator who changes hearts and minds. Kings Garden 5
Education and School Strategies Are you trying to get everyone out the door in the morning without a meltdown—yours and your special needs child?Teacher Lindsey Adams, parents Tina and John Heuchan and grandmother and retired special education teacher Jo Willer provide practical, ‘no panic’ strategies. IEP coaching, (bring your child’s latest!), knowing looks and courage will be in abundance. Kings Garden 4
3:45-5:00pm:Concurrent Sessions:
Yes, you can do this!: Navigating Special Needs Finance & Insurance BDSRA Board members Donna
Fogle and Tony Ferrandino discuss strategies for navigating the complex space of special needs finance.
Kings Garden 4
Children, Epilepsies and CannabinoidsWilliam Treshcer, Professor of Pediatrics and Neurology and Division Chief of Pediatric Neurology at the Penn State Hershey Children's Hospital and Joshua Dearborn, PhD, Post-doctoral fellow, Sands Lab, at Washington University, St. Louis will talk about children, epilepsies and cannabinoids. Dr. Trescher will discuss his experience helping families make decisions related to using CBD oils whose children have intractable seizures. Joshua Dearborn will provide an overview of current research related to CBD and his proposed research for the study of CBD in CLN1 mouse models.
This will be a short lecture format with time for Q&A.Kings Garden 5
6:00-7:15pm:Dinner(meal ticket required)Grand Ballroom 1
5:30-10:00pm:Sibs Outing to Carnegie Natural History Museum
8:00-10:00pm:Trivia game A fun evening of team-based trivia Grand Ballroom 4
Saturday, July 8
8:00am-6:00pm: Conference Registration Open Ballroom Foyer
7:45-8:45am: Breakfast on your own
8:30am-Noon: Batten Kids CareBrigade, Rivers, Traders
8:30am-Noon: Teddy Bear Club for children ages 2-5 Chartiers
8:45- 9:30am:Genetics 101In this early morning pre-meeting research sessionJon Cooper, PhD, will conduct a brief lecture on genetics. (Coffee, tea, and water will be provided)Grand Ballroom 2
9:30-11:45am:Batten Research Overview and Clinical Trial UpdatesBatten researchers and industry science professionals share the latest findings in basic research and on trials current and upcoming. Attendees will have ample opportunity for questions. (Coffee, tea, and water will be provided) Grand Ballroom 2
10:00am-9:00pm:The Batten Disease Memorial is on display for reflection and remembrance. Kings Garden 1
Noon-1:00pm:Scientific Discovery Lunch (meal ticket required)30 years of hard work and dedication have brought us to where we are, come celebrate our scientific journeyGrand Ballroom 1
1:00-5:00pm:Batten Kids CareBrigade, Rivers, Traders
1:00-5:00pm:Teddy Bear Club for children ages 2-5 Chartiers
1:00-2:30pm:Research Open House & Poster SessionView posters outlining the work of Batten researchers from all over the world. Grand Ballroom 3
2:00-3:00pm:CLN1CLN2CLN3 CLN5-8 Undiagnosed Moms Session / CLN1 CLN2CLN3 CLN5-8 Undiagnosed Dads SessionThese peer led discussions are for mothers and fathers of children with various forms of Batten disease to share experiences and challenges, as well as offer and receive support.
CLN1 Moms Stanwix
CLN1 Dads Liberty
CLN2 Moms Duquesne
CLN2 Dads Forbes
CLN3 Moms Kings Plaza
CLN3 Dads Kings Terrace
CLN5-8 Moms Kings Garden 2
CLN5-8 Dads Kings Garden 4
Undiagnosed Moms Benedum
Undiagnosed Dads Boardroom
2:00-3:00pm:Grief and Family Batten parents and families experience a lifecycle of grief and loss throughout their loved ones’ lives. Psychologist Andrea Lurier will lead this grief education session based on her decades-long clinical work with grieving children and families.Attendees will have an opportunity to consider their own grief and the grief of their family when a child is diagnosed with a life limiting illness; learn how to better understand how to help their children and their family cope with illness, change, and loss; as well as better understand each other’s experiences and coping through question and answer discussion.Kings Garden 3
3:00-5:00pm:Music Therapy For affected children Brigade, Rivers, Traders
3:00-5:00pm:Sib/Parent Panel Parents and siblings of those with Batten disease have a conversation about cares, concerns and coping Kings Garden 5
5:00-6:00pm:Preparation for the Kid’s Parade -- Our Batten kids get decked out in themed accessories for this special event
6:00-6:30pm:Kid’s ParadeAffected children are announced and escorted by their siblings as they make their way into the dining room
6:30-8:00pm:Banquet and ProgramGrand Ballroom 1 and 2
8:00-11pm:Dance PartyThe ultimate dance party and the SIBS Dollar Dance Grand Ballroom 1 and 2
Sunday, July 9
7:45-8:45am:Breakfast on your own
8:00-11:00am:Conference Registration Open
8:30-11:30am:Batten Kids CareBrigade, Rivers, Traders
8:30-11:30am:Teddy Bear Club for children ages 2-5 Chartiers
9:00-9:30am:Sunday Morning MeditationsUplifting poems and musicKings Garden 1 and 2
9:45-11:15am:Celebration of LifeThis reflective ceremony honors the memories of loved ones lost to Batten disease
Kings Garden 1 and 2
9:45-11:15am:First Time/Newly Diagnosed Families Decompression Session This session encourages conference attendees to discuss their experiences during the weekend and thoughts about the future Duquesne
11:30am:Farewells
(SIBS PROGRAM BEGINS ON NEXT PAGE)
SIBS AGENDA
Thursday, July 6
Noon-8:00pm:Conference Registration Open
7:00-9:00pm: SIBS Sibs Indoor Picnic and Games Grand Ballroom 1
9:30-11:00pm:Adult SIBS Outing (21+) Market Square Meet in Hotel Lobby
Friday, July 7
7:45-8:45am: Breakfast on your own
9:30-10:00am: Opening Session: All SIBS gather at the Opening Sessionbefore going off to their team building activity Grand Ballroom 2
10:00-10:45am:SIBS Group meets for introductions and team building Birmingham, Smithfield, Ft. Pitt
11:00am-NoonSIBS Group Break-Out Sessions: Designated age groups meet with scientists for Q&A
6-9 year olds: Benedum
10-13 year olds: Duquesne
14-17 year olds: Forbes
18 & older:Boardroom
Noon-1:00pm:Lunch Buffet (meal ticket required) Grand Ballroom 1
1:15-3:00pm:SIBS meet again with their designated age groups for discussions and activities
6-9 year olds: Benedum
10-13 year olds: Duquesne
14-17 year olds: Forbes
18 & older:Boardroom
1:15-3:00pm:SIBS Significant Other Session Stanwix
1:45-2:45pm:Bereavement Session for SibsFor those who have lost a sibling Kings Garden 1
3:00-3:15pm:Break
3:15-5:00pm:SIBS meet again with their designated age groups for discussions and activities
6-9 year olds: Benedum
10-13 year olds: Duquesne
14-17 year olds: Forbes
18 & older:Boardroom
5:30-9:30pm:Load buses for outing at Carnegie Natural History Museum (includes dinner) Meet in Hotel Lobby
9:30pm:SIBS return from Carnegie Natural History Museum
Saturday, July 8
7:45-8:45am: Breakfast on your own
9:00-2:30pm:Load buses for outing to Carnegie Science Center (lunch provided) Meet in Hotel Lobby
2:45-5:00pm:All Age Group Session Birmingham, Smithfield, Ft. Pitt
3:00-5:00pm:Sib/Parent Panel: A panel of Sib leaders answers parents’ questions about cares, concerns and coping for Batten. Kings Garden 5
5:00-6:00pm:Preparation for the Kid’s Parade Brigade, Rivers, Traders
6:00-6:30pm:Kid’s Parade Our Batten kids are announced and escorted by their siblings and friends as they make their way into the ballroom for this special annual tradition
6:30-8:00pm:Banquet & Program (meal ticket required)Grand Ballroom 1 and 2
8:00-11:00pm:Dance Party: The ultimate dance party and the SIBS Dollar DanceGrand Ballroom 1 and 2
Sunday, July 9
7:45-8:45am: Breakfast on your own
9:00-9:30am:Sunday Morning Meditations
Join us for a time of self-directed quiet meditation, poems, and music. Kings Garden 1 and 2
9:45-11:15am:Service of Remembrance
This reflective ceremony honors the memories of loved ones lost to Batten disease Kings Garden 1 and 2
9:45-11:15am:First Time/Newly Diagnosed Families Decompression Session: This session encourages conference attendees to discuss their experiences during the weekend and thoughts about the future Duquesne
11:30am:Farewells