Hunter s Hope Foundation 20th Annual Symposium for Krabbe & Leukodystrophy Families
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1 Hunter s Hope Foundation 20th Annual Symposium for Krabbe & Leukodystrophy Families DAY 1 Wednesday July 19, 2017 WELCOME!! DAILY PROGRAM All Day Family Registration & Check-In Lobby, Tamarack Lodge 4:00 p.m. Board of Directors Meeting Bunker, 2 nd Floor HV Lodge 7:00 p.m. Welcome Dinner Sunrise, 1 st Floor HV Lodge *At the Welcome Dinner, each family will introduce themselves so we can get to know each other. *The Family Hangout Room will be in Sunrise on the 1 st floor of the Holiday Valley Lodge, the
2 DAY 2 Thursday July 20, 2017 LEUKODYSTROPHY CARE NETWORK & LEUKODYSTROPHY RESEARCH 8:00 a.m. Breakfast Buffet Sunrise, 1 st Floor HV Lodge 8:50 a.m. Kid Kamp Opens Creekside AM Activities Planned *Mini Manicures/Hair Braiding *Crafts *Movies *Playground 9:00 a.m. Prayer Party lead by Jill Kelly Birdie, 2 nd Floor HV Lodge SESSION I MODERATOR: Chad Borodychuk Fairway Conference Room 2 nd Floor, Holiday Valley Lodge *Refreshments Available 10:00 a.m. Welcome/Introduction Jacque Waggoner Anna Grantham 10:10 a.m. Leukodystrophy Care Network (LCN) Presentations Duke Children s Hospital Dr. Joanne Kurtzberg Children s Hospital of Philadelphia Dr. Amy Waldman Massachusetts General Hospital Dr. Florian Eichler Monroe Carell Jr. Children s Hospital at Vanderbilt Dr. Kevin Ess Ann & Robert H. Lurie Children s Hospital Dr. Jennifer Rubin Children s Healthcare of Atlanta Dr. Stephanie Keller Children s National Health System Dr. Jamie Fraser 11:55 a.m. Clinical Practice Guidelines Treatment CPG Dr. Joanne Kurtzberg Musculoskeletal CPG Dr. Sally Evans Neurology CPG Dr. Florian Eichler Respiratory CPG Dr. Richard Kravitz 12:35 p.m. Questions DAY 2 Thursday July 20, 2017 (Continued) 2
3 12:45 p.m. Lunch Buffet Sunrise, 1 st Floor HV Lodge 1:30 p.m. Kid Kamp Opens Creekside PM Activities Planned *Therapy Dogs *Crafts *Movies *Playground SESSION II MODERATOR: Phil May Fairway Conference Room 2 nd Floor, Holiday Valley Lodge 1:45 p.m. Leukodystrophy Treatment at Duke Hospital Dr. Joanne Kurtzberg 2:30 p.m. Break 2:45 p.m. Leukodystrophy Research Advancements Dr. Lawrence Wrabetz 4:15 p.m. Kid Kamp Closes Creekside 5:30 p.m. Hunter s Hope Family Photo Clock Tower, behind HV Lodge 6:15 p.m. Dinner Buffet Sunrise, 1 st Floor HV Lodge Icebreaker Sunrise, 1 st Floor HV Lodge *The Family Hangout Room will be in Sunrise on the 1 st floor of Holiday Valley Lodge, the DAY 3 Friday July 21, 2017 HUNTER S HOPE UPDATES & BREAKOUT SESSIONS 8:00 a.m. Breakfast Buffet Sunrise, 1 st Floor HV Lodge 3
4 8:50 a.m. Kid Kamp Opens Creekside AM Activities Planned *Music with Mar *Crafts * Movies *Playground 9:00 a.m. Prayer Party lead by Christin Webb Birdie, 2 nd Floor HV Lodge SESSION III MODERATOR: Christina Levasheff Fairway Conference Room 2 nd Floor, Holiday Valley Lodge 10:00 a.m. LCN Overview and Update Anna Grantham 10:20 a.m. LCN Family Perspective LCN Steering Committee 10:45 a.m. Sibling s Session -11 yrs. & up (Erin Kelly) Maple Leaf, 1 st Floor HV Lodge 11:20 a.m. LCN Care Coordinator Family Panel 11:45 a.m. Opportunities for Involvement Family Panel 12:15 p.m. Kid Kamp Pick up kids Creekside 12:15 p.m. Lunch Buffet Sunrise, 1 st Floor HV Lodge 1:30 p.m. Kid Kamp Opens Creekside PM Activities Planned * Nature Walk/Scavenger Hunt with John and Susan - 11 years and older *Punkin the Clown *Crafts * Movies *Playground DAY 3 Friday July 21, 2017 (Continued) SESSION IV 4
5 1:45 p.m. Women s Session Mom Group A - Child in Heaven Maple Leaf, 1 st Floor HV Lodge Mom Group B Moonshadow & Morning Star, 1 st Floor HV Lodge Men s Session Birdie, 2 nd Floor HV Lodge *This time is reserved for family members of an affected child. ** Sibling Hike 11+ yrs. - John & Susan K. will host an afternoon hike at Holiday Valley. Those interested in joining should meet in Creekside at 1:45 p.m. Please wear sneakers. Water provided. 4:45 p.m. Kid Kamp Closes Creekside 6:00 p.m. Balloon Release & Family Symposium Walk Overlook Terrace 7:15 p.m. Dinner Buffet Sunrise, 1 st Floor HV Lodge *The Family Hangout Room will be in Sunrise on the 1 st floor of Holiday Valley Lodge, the 5
6 DAY 4 Saturday July 22, 2017 FAMILY FREE DAY & STARS OF HOPE TALENT SHOW 9:00 a.m. Breakfast Buffet Sunrise, 1 st Floor HV Lodge 10:00 a.m. Prayer Party lead by Kevin Cushman Moonshadow & Morning Star, 1 st Floor HV Lodge ** FREE Time for Families ** Grab n Go Boxed Lunch will be available from 12:00 1:30 p.m. in Snowledge & Laurel, which is located down the hall from the Lobby in Tamarack. 5:00 p.m. Dinner Buffet Sunrise, 1 st Floor HV Lodge 6:00 p.m. Stars of Hope Family Talent Show Sunrise, 1 st Floor HV Lodge *The Family Hangout Room will be in Sunrise on the 1 st floor of Holiday Valley Lodge, the 6
7 DAY 5 Sunday July 23, 2017 SEE YOU NEXT YEAR! 7:00 a.m. Breakfast Buffet Snowledge & Laurel 1 st Floor, Tamarack Breakfast Buffet is available until 10:00 a.m. 10:00 a.m. Checkout ** Please turn keys & name tags into the front desk of Tamarack** Shuttle schedule available at front desk. Meet at entrance of Tamarack Main Lobby. Please be sure to be on time to ensure a timely arrival to airport. Save the Date! 2018 Hunter s Hope Family Symposium July 18-22,
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Thanksgiving Celebration November 21 st 25 th, 2018 Welcome to Brasstown Valley Resort & Spa! Our Brasstown Valley Resort family has been working for weeks transforming our mountain lodge into a Holiday
The University Club est. 1923
The University Club est. 1923 Week of May 2, 2016 Volume 7 Issue 297 In This Issue Weekly Specials 1 Amenities 2 Clubs 3 Fitness 4 Happenings 5 Weekly Feature 6 Weekly Specials 1 Amenities 2 DRINKS Monday
*Activities are subject to change depending on animal health and safety and weather
During the school holidays, Currumbin Wildlife Sanctuary offers the ultimate Eco Ranger experience. Kids aged 6-12 years can experience and interact with the Sanctuary s wildlife and learn about conservation
COUNTRY GARDENS 2018 CALENDAR OF EVENTS
Fri Apr 27 Sat Apr 28 Sun April 29 Sat May 5 Fri May 11 Sat May 12 Sun May 13 COUNTRY GARDENS 2018 CALENDAR OF EVENTS APRIL Campground roads open to traffic and water system on. Open House 10am-5pm Come
DINING THANKSGIVING WEEKEND CELEBRATIONS JOVÉ KITCHEN & BAR
NOVEMBER HAPPENINGS DINING THANKSGIVING WEEKEND CELEBRATIONS THANKSGIVING DAY BRUNCH November 24th 10:30am 2pm Join us in Jové Kitchen & Bar for a lavish fall inspired buffet with a variety of Chef stations
Hosted by SENC. Dear Newf Lovers,
Hosted by SENC Dear Newf Lovers, Have you ever dreamed about being in the mountains for the holidays with the anticipation of snow and Santa? SENC would like to invite you and your Newf(s) to start off
Painting by Robert Amos Go Jays Go
Entertain * Engage * Enjoy Painting by Robert Amos Join us at The University Club for our One in Minion Kid s Party Featuring lots of fun games and arts & crafts!!! PASTA & PIZZA BUFFET BOB S BABY GREENS
Happy Holidays! Dear guest,
Happy Holidays! Dear guest, The Management and the staff of the Grand Sirenis Riviera Maya would like to wish you a Merry Christmas and a Happy New Year. We are pleased to present you our Christmas program.
Department of Florida Marine Corps League & Auxiliary 2012 Department Conference Host Detachment Sgt I.W.Hatcher Jr.
To: Department of Florida MCL & MCLA Officers and Staff, Detachment Commandants, MCLA Unit Presidents, Florida Pack Officers, Pound Keepers and MCL & MCLA members. The Officers, and Membership of Sgt I.W.
Vendor Opportunities 2014 Application
Gourmet Food Truck Festival 15954 Woods Valley Road, Valley Center, CA 92082 * 760-749-3333 * www.batesnutfarm.biz Saturday April 5 th 12-6pm August 23 rd 1-9pm Lucks Media Group and Bates Nut Farm are