Batten Disease Support & Research Association 2013 Annual Family Conference Program

July 18-21, 2013

Nashville Airport Marriott600 Marriott Drive

Nashville, TN 37214

Conference and Sibs Program

Thursday, July 188am-4pm: Golf Outing - Pine Creek Golf Course, Mt. Juliet, TN Meet in Main Lobby

Coordinated by Randy Royalty8am-5pm: Meeting of the Board of Directors Salons A-BNoon-6pm: Conference Registration Open Hermitage Room

Scientific/Medical Studies Registration Open (for research and carrier testing) Main Hallway1-5pm: Blood Draws (for research and carrier testing) Executive Suite 1306:30-7:30pm: New Family Orientation provides an overview of conference events and introduction of

“Buddy Families” who help answer questions and navigate the weekend. Capitol I7-9:30pm: Welcome Reception brings together all attendees to meet and mingle before conference

business begins. Nashville Ballroom Foyer9pm-12am: The Southern Hospitality Room Open; join in the Texas Hold’Em Poker Tournament Salon C

Friday, July 197-8:15am: Breakfast (meal ticket required) Cumberland Ballroom

(coffee, decaf coffee, donuts, whole fruit, orange juice)8am-Noon: Melodies - Affected Childcare (with attending nurses) Salons G-H

Harmonies – Childcare for 2-5 year olds Salon F10am-9pm: The Batten Disease Memorial Wall is on display throughout the weekend for reflection and

remembrance. Memphis Room8:30-9:00am: 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. Salons D-E

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. Salons D-EClinical Trial Updates, followed by an informal focused Q&A session. Salons D-E- 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

9am-3pm: Conference Registration Open Hermitage Room9am-5pm: Blood Draws (for research and carrier testing) Executive Suite 13011am-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, and Jonathan W. Mink, MD, PhD, Chief of Child Neurology, University of Rochester School of Medicine and Dentistry, facilitate this session for families new to our conference and Batten disease. Salon A

Friday, July 19 (continued)11-11:30am: Life Goes On Meet & Greet - Sherry and Randy Hatchett welcome and introduce bereaved

family members before lunch and their trip to the Country Music Hall of Fame and Museum. Nashville Ballroom Foyer

Noon-1pm: Lunch Buffet (meal ticket required) Cumberland Ballroom(corn and black bean salad, chicken fajitas, crispy beef tacos, refried beans, jack cheese, cilantro rice, salsa, sour cream, cheddar cheese)

1-5pm: Life Goes On Outing at the Country Music Hall of Fame and Museum for those who have lost a loved one to Batten disease. Meet in Nashville Ballroom Foyer

1-5pm: Melodies - Affected Childcare (with attending nurses) Salons G-HHarmonies – Childcare for 2-5 year olds Salon F

1-2:15pm Concurrent Sessions:Symptom Management Part I – Katherine Sims, MD, Director of the Massachusetts General Hospital Developmental Neurogenetics and Mitochondrial Disorders Clinic, and Dr. Jonathan Mink facilitate this open discussion and Q&A session about symptoms and other medical concerns parents and caregivers experience. Jackson RoomAsk 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. Chattanooga RoomPositioning 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. Salon D

2:30-3pm: Ice Cream Social – a tasty break from the July heat! Nashville Ballroom Foyer3:15-4:30pm: Concurrent Sessions:

Symptom Management Part II – This session is a continuation of Symptom Management Part I. Come with your questions and concerns to discuss with Dr. Sims. Also during this session, Dr. de los Reyes and Dr. Lehwald from Nationwide Children’s Hospital will address sleep problems of those affected with Batten disease. Jackson RoomFundraising 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. Capitol IPositioning and Mobility: A demonstration of products and devices – Durable medical equipment and NuMotion representatives Andy Foster, MSOT, ATP, and Renee Waddell, PTA, ATP, will be available to answer questions regarding a variety of wheelchairs, and bathing and positioning products. Salon DGrandparents/Extended Family Session – Facilitated by Dorothy 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. Knoxville Room

4:30-6:00pm: BDSRA Board Meet & Greet and Chapters Meeting – Attendees are invited to chat with board members and staff to share ideas and goals, followed by a meeting with Chapter representatives. Salon B

6:30-7:30pm: Dinner (meal ticket required) Cumberland Ballroom (freshly baked rolls, butter, garden salad, vinaigrette dressing, chicken piccata, lemon caper sauce, herb orzo pasta, broccoli, chocolate cake)

Friday, July 19 (continued)8-11pm: An hour-long Family Concert for all ages, followed by the beloved trivia game, provide

entertainment after dinner. Cumberland Ballroom10pm-12am: The Southern Hospitality Room Open Salon C

Saturday, July 207-8:15am: Breakfast (meal ticket required) Cumberland Ballroom

(coffee, decaf coffee, assorted muffins, jelly, butter, whole fruit, orange juice, warm egg and cheese breakfast burritos, salsa)

8am-Noon: Melodies - Affected Childcare (with attending nurses) Salons G-HHarmonies – Childcare for 2-5 year olds Salon F

8:30-9:45am: State of the Science – Discussion facilitated by members of BDSRA’s Scientific Advisory Board. Learn about the latest, promising advancements in Batten disease. Salon B

9am-Noon: Conference Registration Open Hermitage Room9-10:30am: Meditation Workshop - Gordon Peerman, DMin, a psychotherapist in private practice, as well

as an adjunct faculty member at Vanderbilt Divinity School, and Karen Pilkerton, RN, who has more than 10 years in mindfulness training and is a member of the Insight Meditation Group, facilitate this program. Capitol I

10am-9pm: The Batten Disease Memorial Wall is on display for reflection and remembrance. Memphis Room

10-11am: The Melodies (affected children) and the Harmonies (2-5 year olds) get a delightful visit from some furry friends with guest therapy dogs and their handlers. Salon F

10-11:45am: Research Open House & Poster Session – Learn about various research processes and have one-on-one discussions with the scientists. Salon E

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 who has more than 10 years in mindfulness training and is a member of the Insight Meditation Group. Jackson Room

Noon-1:30pm: Lunch Buffet (meal ticket required) Cumberland Ballroom(Caesar salad, croutons, Parmesan cheese, spaghetti, meatballs, vegetarian lasagna, garlic cheese bread, roasted oregano zucchini, sweet onions)

1-5pm: Melodies - Affected Childcare (with attending nurses) Salons G-HHarmonies – Childcare for 2-5 year olds Salon F

1:30-2:45pm: INCL LINCL Session for 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 is a member of the Insight Meditation Group. Jackson Room

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. Salon A

1:30-4:30pm: Meeting of Medical Advisory Board and Scientific Advisory Board Chattanooga & Knoxville Rooms

1:30-5pm: Free Time – Check out all that Nashville has to offer or hang out with your peeps at the pool.Saturday, July 20 (continued)

1:30-5pm: The Southern Hospitality Room Open Salon C5-6pm: Free Time and Preparation for The Country Stars Kid’s Parade – The affected kids get decked

out in themed accessories for this special event. Salons F, G, H Foyer6-6:30pm: The Country Stars Kid’s Parade - Affected children are announced and escorted by their

siblings as they make their way into the dining room under thunderous applause! Cumberland Ballroom

6:30-8pm: Banquet & Program (meal ticket required) Cumberland Ballroom(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)Festive, dressy casual for this fun family event.

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. Cumberland Ballroom

8pm-12am: The Southern Hospitality Room Open Salon C

Sunday, July 217-8:30am: Breakfast (meal ticket required) Cumberland Ballroom

(coffee, decaf coffee, orange juice, whole fruit, scrambled eggs with diced ham and cheddar cheese, breakfast potatoes, sausage gravy and biscuits, grits and cheddar cheese)

8:30-11:30am: Melodies - Affected Childcare (with attending nurses) Salons G-HHarmonies – Childcare for 2-5 year olds Salon F

9-9:30am: Non-Denominational Prayer ServiceDr. Russ Corley, founder and Executive Director of Encouragement Ministries, will lead a brief service of prayer and meditation. Salons A, B, C

9:45-11:15 am: Service of RemembranceThis reflective ceremony honors the memories of loved ones lost to Batten disease. Everyone is welcome, however, only attend if you feel comfortable. Salons A, B, C

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. Capitol I

11:30am: Farewells

(SIBS PROGRAM BEGINS ON NEXT PAGE)

SIBS AGENDA

Thursday, July 18Noon-6pm: Conference Registration Open Hermitage Room7-9pm: Sibs Pool & Pizza Party – need we say more? (Lifeguards will be on duty.) Indoor/Outdoor Pool

and Deck Area9pm: Sibs 18 and older head out for some Nashville hospitality.

Friday, July 197-8:15am: Breakfast (meal ticket required) Cumberland Ballroom

(coffee, decaf coffee, donuts, whole fruit, orange juice)8:15-9:00am: Sibs Group meets for introductions and ice-breaking activities. Capitol I9-10am: Sibs Group Break-Out Sessions – designated age groups have a chance to meet with scientists and

ask questions. 6-9 year olds: Rose-Mary Boustany, MD, American University of Beirut Jackson Room10-13 year olds: Jonathan Cooper, PhD, The Institute of Psychiatry, King’s College London Chattanooga RoomAges 14 & older: David Pearce, PhD, Sanford Children’s Health and Research Center Knoxville Room

10:15-11:30am: Sibs meet again by age groups for facilitated discussions and activities. 6-9 year olds: Colleen Heath, MEd Jackson Room10-13 year olds: Rob Hatchett & Brian O’Neill Chattanooga Room14-17 year olds: Josh Bowen Knoxville Room18 & older: Self-Directed Capitol II

Noon-1pm: Lunch Buffet Cumberland Ballroom(corn and black bean salad, chicken fajitas, crispy beef tacos, refried beans, jack cheese, cilantro rice, salsa, sour cream, cheddar cheese)

1:15: Load buses for outing at Nashville Zoo at Grassmere (dinner at the zoo) Meet in Nashville Ballroom Foyer

6:30-7:30pm Sibs return from the Nashville Zoo; activities in The Southern Hospitality Room Salon C8pm: An hour-long Family Concert for all ages followed by the trivia game. Cumberland Ballroom

Saturday, July 207-8:15am: Breakfast (meal ticket required) Cumberland Ballroom

(coffee, decaf coffee, assorted muffins, jelly, butter, whole fruit, orange juice, warm egg and cheese breakfast burritos, salsa)

9-10am: Bereavement Session for 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. Memphis Room

9-10am: Sibs of all ages enjoy some canine time with therapy dogs and their handlers. Nashville Ballroom Foyer

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. Salon B

10-11:30am: The Sibs Group partakes in some creative, hands-on activities when The Frist Center for the Visual Arts brings the art experience to the conference. Salon D

1:30pm Load buses for outing to Nashville’s Adventure Science Center Meet in Nashville Ballroom Foyer

5pm: Sibs return from Nashville’s Adventure Science Center

5-6pm: Free Time and Preparation for The Country Stars Kid’s Parade Salons F, G, H Foyer6-6:30pm: The Country Stars Kid’s Parade Cumberland Ballroom6:30-8pm: BDSRA Banquet & Program (meal ticket required) Cumberland Ballroom

(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 Cumberland Ballroom

Sunday, July 217-8:30am: Breakfast (meal ticket required) Cumberland Ballroom

(coffee, decaf coffee, orange juice, whole fruit, scrambled eggs with diced ham and cheddar cheese, breakfast potatoes, sausage gravy and biscuits, grits and cheddar cheese)

9-9:30am: Non-Denominational Prayer ServiceDr. Russ Corley, founder and Executive Director of Encouragement Ministries, will lead a brief service of prayer and meditation. Salons A, B, C

9:45-11:15 am: Service of RemembranceThis reflective ceremony honors the memories of loved ones lost to Batten disease. Everyone is welcome, however, only attend if you feel comfortable. Salons A, B, C

9:45-11:15am: First Time/Newly Diagnosed Families Decompression Session (Sibs included)Share thoughts and experiences from the weekend. Capitol I

11:30am: Farewells