Activities Form
SIBS Agenda
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Activities Form |
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SIBS Agenda |
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| The Tennessee Chapter of the Batten Disease Support and Research Association is proud to host the Eleventh Annual BDSRA International Family Conference, July 28 to August 1, 1999 in Nashville, Tennessee. We’re expecting this to be the most attended conference yet. That’s why the Nashville in Ninety-nine conference is expected to be … Hitting the right note for Batten. You are the most important part of this effort. This is the official registration packet which contains important information about the conference and how to register. |
| Location | The 1999 BDSRA International Family Conference will be held in Nashville, Tennessee, also known as Music City, U.S.A. Our headquarters hotel is located adjacent to the Nashville International Airport, just four minutes from the Grand Ole Opry, and only ten miles from the bustle of "The District" and Music Row in Nashville’s downtown. Besides being the State Capitol, Nashville is at the intersection of three major interstate highways, located close to the geographic center of Tennessee and within 600 miles of 50 percent of the U.S. population. Average summer temperatures (high/low) are 88 and 67 degrees Fahrenheit. Nashville is in the Central Standard Time Zone. The Tennessee Chapter of BDSRA says, "Y’all come, and plan on some down-home, southern hospitality." |
| Hotel | The headquarters hotel is the Nashville
Airport Marriott, 600 Marriot Drive, Nashville, Tennessee 37214-5010.
The conference room rate is $89.00 per night plus tax (currently 12.25%)
for a single or double room. To make your hotel reservations
call the hotel directly at (800) 770-0555 or (615) 889-9300.
Identify that you are with the Batten Disease Support and Research Association
(not BDSRA). We suggest you make your reservations early to ensure
availability. In order to expedite reservation (and check-in), the
hotel requests that you have the following information ready when calling:
- Arrival and Departure dates
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| Transportation | Interstate Highways I-65, I-24, and I-40 provide excellent access by automobile. Included in the package is a map sponsored by Cracker Barrel Restaurants that should help drivers. 16 major airlines service the Nashville International Airport with frequent schedules. Complimentary transportation from the airport is provided by the conference headquarters hotel (Marriot Airport Shuttle ) with pick-ups every 15 minutes. Wheelchair lifts are available on some Marriot shuttle vans. Call the Marriot from the airport or inform the shuttle driver if a special service is needed. Taxi service is also readily available from the Airport. |
| Registration | There is no registration fee for the conference.
Please read the entire registration packet before filling out the registration
form. Remember the registration form is only for the conference.
You must make hotel reservations
directly with the hotel. Meal payments
can be made with your registration (checks payable to: Tennessee
Chapter B.D.S.R.A) or can be made upon conference arrival. Registration materials should be completed and submitted as soon as possible, but no later than June 15, 1999. Receiving your registration early helps us plan more effectively. Mail your completed registration form to: Hugh Smith
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| Meals | Continental Breakfast Buffet - (Friday, Saturday,
Sunday)
Fruit, cereal, pastries, juice, milk and coffee ($6.95 value for $5.00). Friday Lunch - Soup Du Jour, Grilled Chicken Caesar Salad, Dessert (Chef's selection), Coffee,Tea ($11.00 per person) Friday Dinner - A southern specialty of Bar-B-Q, smoked on the premises, Vegetables, Dessert, Coffee, Tea (Adult -- $16.00) Child 12 and under Menu TBD ($10.00) Saturday Lunch - Garlic Breadsticks, Caesar Salad, Beef Lasagna, Sauteed Summer & Zucchini Squash, Coffee, Tea ($13.00 per person) Saturday Dinner - Dinner rolls and butter, Garden Green Salad, Chicken Piccata (Lightly sauteed chicken breast with Lemon Caper Sauce), Seasonal Fresh Vegetables, Wild Rice, Cookies-N-Cream Pie,coffee, tea (Adult -- $20.00) Child 12 and under Menu TBD ($10.00) Please indicate meal choices and quantities on the registration form to for planning. Any special dietary needs should be noted on form. |
| Kids Care | Professional and assisted care for the affected
children and siblings 4 years and under will be provided on Friday and
Saturday of the conference from 8:00 am to 5:00 p.m. and from 8 a.m. to
noon on Sunday. It is important that you
indicate participation in this program on the registration form.
You will receive a liability release and information
forms to be completed with your registration confirmation.
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| SIBS Program | The Siblings program is jam packed with lots
of activities and fun. See the tentative program included in this
packet. It is important that all siblings be registered. Again
this year the SIBS will have their own hospitality room where they can
comfortably "hangout" between activities. Extended family members
and friends are welcome to come along on all activities for a nominal fee
of $25. This can be paid with registration or at conference arrival.
Reminder to SIBS and parents: The SIBS program is NOT mandatory, so if your child does not participate in a SIBS program parents must assume responsibility for their child. We encourage SIBS to participate in the planned activities. If they cannot, or choose not to, attend organized activities, parents make other arrangements. Note also that the Hospitality Room will not be open while SIBS are away on activities. |
| Mature SIBS | This conference will be the first to include sessions customized for young adult and adult SIBS, eighteen and older, some of whom did not have the opportunity to participate in BDSRA activities as they dealt with the special concerns of Batten siblings. We encourage each of you to be a part of the support, assistance and healing effort that BDSRA strives to provide to the international Batten family. |
| First-time? | Y’all come! If you have never been to a BDSRA Family Conference you have missed an opportunity to meet and exchange information with families who understand your experiences, feelings and questions. The Buddy Program, led by Roger Brinkley, helps match first year families with families who have been to previous conferences and have children with the same type Batten disease. Try to attend the orientation session on Thursday evening. We intend to make you feel welcome and help you make the most of your first BDSRA family conference. |
| Bereavement | This program, initiated at the 1997 San Antonio Conference, provides support to bereaved family members who have experienced the loss of child(ren). Having established a network of support and a source of information through BDSRA, many grieving families were looking for continuing, ongoing help to assist them in their adjustment. Beginning with that conference and through the recently developed Bereavement Outreach Program, families are reassured that BDSRA continues to remember these needs. A professional counselor/facilitator and parent will lead this program, meet with bereaved parents and others, educate them on some of the normal and expected reactions to loss, and provide opportunities to work through their personal grief. Topics discussed will include: reactions to loss, common myths and misconceptions about grief, developing a support network, taking care of the care-taker, coping with special days, anniversary dates and more |
| Stipends | There will be limited stipend funds available to help with room and meal expenses during the conference. Those who would like to request help are asked to complete the enclosed Stipend Request Form and return it directly to the BDSRA office, 2600 Parsons Avenue, Columbus, Ohio 43207. Please apply early as requests will be taken on a first come, first serve basis. Remember that stipends do not cover transportation. Please refer to the enclosed quilt information and help us sell those raffle tickets to friends and family to help raise funds for the stipend program. The tickets sell for $1 each. Send ticket proceeds and stubs to the BDSRA office as soon as possible. |
| Program Speakers | Program speakers and facilitators are still being
finalized, and the conference planning team is very excited about the ones
that are confirmed so far;
Sandra Hoffman, PhD, University of Texas,
Southwest Medical Center
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| STAR Center | Conference participants will have the opportunity to benefit from the programs, mobile facilities, assessments, private consultations and facilitation of experts of the Special Technology Access Resource (STAR) Center of Jackson, Tennessee. The center specializes in the areas of assisted technology, augmented communications and music, art, massage, and vision therapy. See the included STAR Center brochure for more information. The Star Center will have their mobile laboratory for individual family assessment and consultation throughout the conference. You’ll want to pre-register on the back of the registration sheet to schedule an individual or family assessment and consultation session. |
| Memorial Wall | The Memorial Wall presented at the 1997 Conference in San Antonio and the 1998 Richmond Conference will again be on display. |
| T-shirts | The annual tradition of a conference T-shirt will be continued. Complimentary shirts will be provided for affected children, siblings and parent(s). Please indicate the sizes needed by each person attending on the registration form. Extra shirts will be available for $10 each at the conference for extended family members and friends. |
| Special Fun | Friday night’s family dinner will be a special
treat as we enjoy a regional specialty. We’ll have a Tennessee flavored
barbecue prepared by Howard Blankenship, a local sticky-fingered specialist.
Bring your appetite and prepare to feast.
Friday evening will also provide conference attendees an after dinner opportunity to attend the world-famous Grand Ole Opry. A brochure about the Opry is included in this packet. Tickets to the event and bus transportation to the Opry and back to the conference hotel will be $16 per person. Don’t miss this opportunity to participate in a unique Nashville event with your friends and family. Mark your planned attendance to this event on your registration sheet. |
| More Special Fun | One of the nights the older sibs (teenagers) may go out after planned activities. Activities will include the Music Valley Car Museum, Wax Museum and the Willie Nelson Museum. Going to these activities will be free to them. Transportation to be arranged. |
| Nashville | Besides the well-known Grand Ole Opry, there are many other sites, sounds, and action to enjoy in the immediate Nashville area. The Hermitage, the home of Andrew Jackson, the 16th President of the United States, has long been a favorite for visitors. The Parthenon, modeled after the ancient Greek structure of the same name, is an architectural wonder of itself plus it contains many works of art for you to enjoy. "The District" in downtown Nashville has many places for fun, food, and music. Check the enclosed brochures. |
| Tennessee | From the Mississippi River and Blues of Beale Street in Memphis of West Tennessee to the Great Smoky Mountains, the most visited U.S. National Park, in East Tennessee, you will find a plethora of natural and man-made wonders in the beautiful state of Tennessee. Your packet also contains a brochure of regional events, sites, and activities to help you plan an extended time of enjoyment as you travel to and from the conference. |
| Golf Outing | The annual golf outing is planned for Wenesday, July 28 if enough interest is shown. If you are interested in this event please check the box on the registration form to receive more detailed information. All skill levels welcome! Join us for a leisurely day on one of Nashville’s finest golf courses. |
| Questions | Please call upon members of our planning committee
if you have any questions:
Ethel & Clifford Flanagan (423)354-3619
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