Thursday, July 198:00am-4:00pm: Golf Outing coordinated by Randy Royalty 8:30am-4:30pm: Board Meeting Stones RiverNoon-8:00pm: Conference Registration and Scientific/Medical Studies Registration Registration foyer6:30-7:30pm: Grandparent/Extended Family Happy Hour: Grandparents, aunts, uncles, and all other adult extended family members come together to connect and have a good time. (Light appetizers and a cash bar will be available) Champions Restaurant6:30-7:30pm: New Family Meet and Greet: Families new to the conference meet with BDSRA Family Liaison, Tracy Kirby, and their buddy families to talk about what to expect over the next three days and get to know one another. Salon A-C7:00-9:00pm: SIBS Pizza and Pool Party: All SIBS 6 years and up are invited to a Pool Party! Come meet new sibs, connect with old friends, and have fun. (Life Guards will be provided). Pool7:30-9:30pm: Welcome Reception: All conference attendees welcome! (Light snacks and a cash bar will be available) Salon E and ballroom foyer 9:00pm-Midnight: Texas Hold’Em Poker Tournament: All conference attendees are invited to participate in a Texas Hold’Em Poker Tournament Salon A-C9:30-11:00pm: Adult SIBS Outing (21+) Meet in hotel lobby

Friday, July 207:45-8:30am: Breakfast on your own8:00am-6:00pm: Conference Registration and Scientific/Medical Studies Registration Registration: Foyer8:30am-Noon: Childcare: Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and Sibs 2-5 years old. Chattanooga, Knoxville, Memphis, Jackson8:45-10:45am: Friday Morning Kickoff Salon DE8:45am Welcome and announcements 9:00am Keynote Speaker Jon Robinson: Tennessee Titans General Manager Jon Robinson will talk about his experience as a parent to a special needs child, and how he remains family focused in a high profile career.9:45am Keynote Speakers Laura Edwards and Linda Phillips: Sibling and author Laura Edwards will talk about her upcoming memoir “Run to the Light” a universal story of love, hope and what it means to believe. Laura calls it her “300-page love letter to Taylor and all of the brave children and families who’ve walked a similar path.” Linda Phillips will discuss her upcoming novel in verse “Behind These Hands” which is loosely based on her time working with Batten children as a teacher.10:15am Keynote Speaker Jennifer Bernstein: Jennifer Bernstein, Executive Vice President at Horizon Government Affairs and coordinator at Rare Disease Legislative Advocates (RDLA), has worked in Congress alongside families touched by rare disease and will talk about the important work ahead. 10:00am-10:00pm: The Batten Disease Memorial is on display throughout the weekend for reflection and remembrance. Capital 211:00am-12:00pm: Breakouts by Type of Batten Disease: Moved up in the conference schedule by popular request, these sessions are for parents to meet one another and talk about the unique challenges they face.

– CLN1 Moms Salon C – CLN1 Dads Executive Suite 138 – CLN2 Moms Salon A – CLN2 Dads Salon B – CLN3 Moms Executive Suite 130 – CLN3 Dads Executive Suite 150 – CLN5-10 Moms Salon E – CLN5-10 Dads Salon D – Undiagnosed Moms Salon E – Undiagnosed Dads Hermitage 11:00am-12:00pm: Grief and Family: Bereaved family members can meet with Jennifer Siedmen from Courageous Parents Network to talk about the complexities of grief and share their experiences. Capital 1Noon-1:00pm: Lunch Buffet (meal ticket required) Cumberland Ballroom1:00-5:00pm: Life Goes On Outing: A special time for parents (only) who have lost a child to Batten disease to do something fun together. This year we will be touring Nashville on the Old Town Trolley.1:00-5:00pm: Childcare: Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and Sibs 2-5 years old. Chattanooga, Knoxville, Memphis, Jackson1:15-2:15pm: First Time/Newly Diagnosed Session: Joe Vigil, Ph.D., a bereaved parent, private practitioner, and rehabilitation psychologist, will facilitate this session for families new to our conference and/or to Batten disease. Capital 11:30-2:30pm: Animal Therapy: Childcare will be visited by Mini’s on the Move, a fun group of therapy miniature horses.

2:30-3:30pm C O N C U R R E N T S E S S I O N S Grandparents and Extended Family Peer Support: Grandparents, aunts, uncles and others closely involved with Batten families share their experiences with each other. Salon A Occupational and Speech Therapy: Join Occupational Therapist Jeni Goddard and Speech Therapist Andrea Boerger from Nationwide Children’s Hospital to talk about ways therapies can make an impact on your child’s quality of life. Salon B Creating a Legacy For Your Child: Parent panelists, Heather Dainiak, Tony and Katie Ferrandino, Sara Kennicott, Fred Surrey and Jen and Tracy VanHoutan will tell their deeply personal stories about wanting to make a difference and wanting the larger community to participate in remembering their child by supporting BDSRA’s mission. There will also be time for Q&A moderated by fundraising professional Amy Funk of Ter Molen Watkins & Brandt, LLC where you can ask questions about how you can create a community around your child’s legacy. Salon C Building a School Community Around Your Child: Halia Duplak, a Learning Support Teacher at the James Nisbet School in Winnipeg, Manitoba, and Allison Conway, M.Ed., from the Tennesee School for the Blind, Nashville, Tennessee, will both discuss their schools’ unique approaches to building community. They will also discuss the ways they work with families to create a welcoming environment for children affected by Batten disease. Capital 1

3:45-5:00pm: C O N C U R R E N T S E S S I O N S Grandparent and Extended Family Ask-A-Researcher: Join us for an hour of Q&A with Dr. Sue Cotman, from Massachusetts General Hopital. Dr. Cotman will answer your questions about Batten disease, its progression, and the latest research. Salon A

2018 FAMILY CONFERENCE PROGRAM

11:00am-12:30pm: Research Open House and Poster Session: View scientific posters outlining the work of Batten researchers from all over the world. Salon A-C12:30-1:30pm: Lunch Buffet (meal ticket required) Cumberland Ballroom1:30-5:00pm: Childcare: Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and Sibs 2-5 years old. Chattanooga, Knoxville, Memphis, Jackson1:45-2:45pm: Strategic Planning Summary: During its 30th year as an organization, the BDSRA board elected to lead a Strategic Planning Process to prepare for another successful three decades of family support, research and advocacy. As the landscape of the Batten disease community evolves, BDSRA adapts and grows with it, continuing a commitment to serving the needs families have today. BDSRA board members will provide an overview of the Strategic Planning Process that the organization underwent, the resulting priorities and Q&A. Capital 12:30-4:30pm: Animal Therapy Childcare: will be visited by Pet Partners therapy dogs. 2:30-4:30pm: Music Therapy with childcare Chattanooga, Knoxville, Memphis3:00-5:00pm: SIB/Parent Panel: Parents and a panel of adult siblings have a conversation about cares, concerns, and coping. Capital 15:00-6:00pm: Preparation for the Kid’s Parade: Sibs and their loved ones affected by Batten disease get decked out in themed accessories for this special event. Chattanooga, Knoxville, Memphis6:00-6:30pm: Kid’s Parade: Our loved ones affected by Batten disease are announced and escorted by their siblings as they make their way into the ballroom.6:30-8:00pm: Banquet and Program (meal ticket required) Salon A-F8:00-11:00pm: Dance Party: The ultimate dance party and the SIBS Dollar Dance Salon A-F

Sunday, July 228:00-11:00am: Conference Registration Open 8:00-11:30am: Childcare: Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and Sibs 2-5 years old. Chattanooga, Knoxville, Memphis, Jackson8:00 – 9:00am: Breakfast (meal ticket required) Salon DE 9:30 – 10:30am: Celebration of Life: This reflective ceremony honors the memory of loved ones lost to Batten disease Capital 1-29:30 – 10:30am: First Time/Newly Diagnosed Families Decompression Session: This session, led by Joe Vigil, Ph.D., encourages conference attendees to discuss their experiences during the weekend and thoughts about the future Salon C11:00am: Farewells

Symptom Management: We have a new format for this session. You will have the opportunity to take a few minutes to introduce yourself to our Batten physicians and ask questions in a “round robin” format. Physicians cannot give you direct medical advice but can help you explore more options with your doctor at home. Salon B Music Therapy 101: Chiltern Music Therapy therapist, Katya Herman, will discuss the impact music therapy can have and work with parents and extended family members to teach them techniques to use at home. Salon C3:15-8:30pm: SIBS Outing to Nashville Zoo Meet in hotel lobby at 3:15pm 6:00-7:15pm: Dinner Buffet (meal ticket required) Cumberland Ballroom8:00-10:00pm: Trivia game: A fun evening of team-based trivia hosted by BrainBlast Trivia Cumberland Ballroom

Saturday, July 217:30-8:30am: The Future of the Batten Memorial: As the Batten Memorial has expanded over the years the logistical challenges have increased. Charlie Leffler and Steve Thompson are leading a small planning group in exploring how to make sure a memorial experience remains a part of the annual conference in the future. This session will provide an update on this effort and the options being considered to provide a sustainable Memorial to our loved ones. If you are interested in being part of this discussion please join Charlie and Steve. Capital 17:45-8:45am: Breakfast on your own8:00am-5:00pm: Conference Registration and Scientific/Medical Studies Registration. Registration foyer8:30am-2:00pm: SIBS Outing to SOAR Adventures: Meet in hotel lobby at 8:30 am 8:30am-12:30: Childcare: Staffed by nurses and highly trained volunteers, our childcare is for those affected by Batten disease of all ages and Sibs 2-5 years old. Chattanooga, Knoxville, Memphis, Jackson8:45- 9:30am: Genetics 101: Dr. Erica Augustine, from the University of Rochester Batten Center, will conduct a brief lecture on genetics basics. (Coffee, tea, and water will be provided) Salon DE9:30-11:00am: Batten Science Updates: Attendees will have ample opportunity for questions. (Coffee, tea, and water will be provided) Salon DE The Role of the US Food & Drug Administration in Drug Development: Ilan Irony, MD, Director of Orphan Product Development at the FDA, will discuss the role of drug development process in rare diseases and the importance of the family and patient voice. The Promise and Challenge of Treating the Eye in Batten Disease: Dr. Rebecca Whiting, Ph.D., from the University of Missouri School of Medicine, will talk about the challenges of addressing Batten disease in the eye and the hope she sees in the current research. Natural History Databases and How Families Can Propel Science: Dr. Jon Mink, MD, Ph.D., of the University of Rochester Batten Center, will talk about the importance of natural history databases as building blocks of research and the vital ways families can be involved. Dr. An Dang Do, Assistant Research Physician at the National Institutes of Health, will describe a recently initiated natural history effort entitled Investigations of Juvenile Neuronal Ceroid Lipofuscinosis. This study’s aim is to identify clinical or biochemical markers that can be used in diagnostic testing and in therapies development for CLN3.10:00am-9:00pm: The Batten Disease Memorial is on display for reflection and remembrance. Capital 2

Thursday, July 19Noon-8:00pm: Conference Registration and Scientific/Medical Studies Registration 7:30-9:15pm: SIBS Pizza and Pool Party All SIBS 6 years old and older are invited to a Pool Party! Come meet new sibs, connect with old friends, and have fun. (Life Guards will be provided) Pool9:30-11:00pm: Adult SIBS Outing (21+) Meet in Hotel Lobby

Friday, July 207:45-8:30am: Breakfast on your own8:45-9:00 am Friday Morning Kickoff: All SIBS gather at the Opening Session for a short presentation by the SIBS Leaders before going off to their Icebreak Session Salon DE9:00-10:45am: SIBS Icebreaker Session: A great session for all SIBS to wake up and start the day with fun filled games and a few introductions Cumberland Ballroom10:45-11:00am: Break11:00am-12:00pm: SIBS Research Session: Meet with scientists for Q&A along with learning the latest in testing, trials and research that are currently taking place and what is in store for the future. Age appropriate discussions and activities. Ages 6-9 Stone’s River Ages 10-13 Salon H Ages 14-17 Salon G 18 & older Salon F12:00-1:00pm: Lunch Buffet (meal ticket required) Cumberland Ballroom1:00-3:00pm: SIBS Group Break-Out Sessions: This is an opportunity to meet and get to know other SIBS their own age in individualized age discussions and activities Ages 6-9 Stone’s River Ages 10-13 Salon H Ages 14-17 Salon G 18 & older Salon F2:00-3:00pm: Bereavement Session for SIBS: An opportunity for those who have lost a sibling to spend time with other bereaved SIBS and view the Batten disease Memorial Capital 23:00-3:15pm: Break3:15-8:30pm: Load Buses for SIBS Outing to Nashville Zoo: Home to more than 2,764 animals and 365 species! At 6pm the zoo will close their doors but will remain open just for the SIBS. The SIBS will enjoy a specially prepared dinner in the Jungle Terrace. After dinner they can use the jungle gym, ride on the Soaring Eagle Zip Line and the Wild Animal Carousel! (dinner provided) (SIBS Shirts Required) Meet in lobby at 3:15pm 8:30pm: SIBS return from Nashville Zoo: Any child under the age of 13 will have to be picked up by a guardian Meet in lobby

Saturday, July 217:45-8:45am: Breakfast on your own 8:30am-2:00pm: Load Buses for SIBS Outing to SOAR Adventure: A unique tower creates a safe and interactive atmosphere for children and adults . Their Tower features 4 levels and over 110 climbing elements that will challenge kids and adults both mentally and physically. At each platform you have access to 3 different elements. There is also a 18 hole miniature golf course for those who do not like to climb. After the morning of climbing and golf the group will enjoy a lunch on the patio! (lunch provided) (SIBS Shirts Required) Meet in Hotel Lobby at 8:302:00pm: SIBS return from SOAR Adventures2:00-3:45pm: SIBS Break-Out Session Part 1: This session is designed to take the SIBS program back to their roots. It has always been important to have time to connect with SIBS of all ages. Ages 10 & older Salon F,G,H Art Project Ages 6-9 Stone’s River3:00-5:00pm: SIB/Parent Panel: Parents are encouraged to come and ask questions they may have about their SIBS. It is important to note that during the SIB/Parent panel, other than the SIBS on the panel, SIBS are not allowed in the room. Parents can freely ask questions about their SIB. As a response, the SIBS on the panel do NOT discuss anything spoken about in confidence by the other SIBS. They will make generalized statement that many other SIBS have made or give their own personal example as a response. The SIB/Parent panel will also NOT discuss anything spoken about in the panel to other SIBS. Capital 13:45-4:00pm: Break4:00-5:00pm: SIBS Break-Out Session Part 2: Closing session for the weekend Ages 10 & older: Cumberland Ballroom Swimming – Ages 6-9: (Life Guards will be provided) Meet at pool5:00-6:00pm: Preparation for the Kid’s Parade: Sibs and their loved ones affected by Batten disease get decked out in themed accessories for this special event. Chattanooga, Knoxville, Memphis6:00-6:30pm: Kid’s Parade: Our loved ones affected by Batten disease are announced and escorted by their siblings as they make their way into the ballroom.6:30-8:00pm: Banquet and Program (meal ticket required) Salon A-F8:00-11pm: Dance Party: The ultimate dance party and the SIBS Dollar Dance Salon A-F

Sunday, July 228:00-11:00am: Conference Registration Open 8:00–9:00am: Breakfast (meal ticket required) Salon DE 9:30–10:30am: Celebration of Life: This reflective ceremony honors the memory of loved ones lost to Batten disease Capital 1-29:30–10:30am: First Time/Newly Diagnosed Families Decompression Session: This session encourages conference attendees to discuss their experiences during the weekend and thoughts about the future Salon C

SIBS AGENDA

HOTEL LAYOUT AT-A-GLANCE

SPECIAL THANKS TO OUR WALK THE LINE TO A CURE SPONSORS

PLATINUM

SILVER

Nursing Care

TEALThe Allio Family / Catie and Annie’s CopsAnonymousCaring for Caroline / The Park FamilyDrew’s Hope Research FoundationEthan’s ReasonGarrett the GrandRick and Katie GodfreyHarmony 4 HopeRandy and Sherry HatchettHope4TaylaLittle Batten WarriorsNew GenesNuMotionOhio Chapter BDSRAPolaryx Therapeutics, IncSanford Children’s Research Center Southeast Chapter BDSRA

PATRONCircumvent PharmaceuticalsCollaborations PharmaceuticalsThe Fennell FamilyHolding Onto KateMackenzie’s HopeRally 4 RexTaylor’s Tale

Anonymous

GOLD

BRONZEAnonymousBravery for BentleyChildren’s Hospital of Orange County,

Neuroscience Institute

Gayle Holton Design Love for LeightonMary Payton’s Miracle FoundationMetro NY/NJ Chapter BDSRA

www.bdsra.org

The printing of this program has been generously donated.

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2019 BDSRA Family ConferenceBDSRA invites you to join us

in Denver, ColoradoJuly 18-21, 2019

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