CHILD CARE

Who oversees affected childcare?

BDSRA hires local care providers (nurses and allied health professionals), as well as volunteers who have experience working with children who have Batten disease. Families must register on-line for affected childcare when they register for the conference. Affected childcare volunteers do not handle the following: feeding, toileting/diapering, and medications. Parents are expected to do these tasks.

When is childcare available?

Childcare is available Friday, July 8 (7:45am–5pm) and Saturday, July 9 (7:30am-5pm). It will close 12-1pm for a lunch break each day.

I’m concerned that my child may have a bad seizure while at the conference. Is medical help available during the conference?

BDSRA alerts local hospitals in advance of the conference to ensure their Emergency Department staffs are aware of our presence.

HOTEL

What parking options are available?

Valet parking ($42/day) is available at the Hilton Cleveland Downtown. The Hilton’s self-parking is across the street from the hotel and the group will receive the discounted rate of $20/day. Self-parking for oversized vehicles is available on the surface lot. After parking, use the tunnel to walk to the hotel registration desk.

Does the Hilton have an airport shuttle?

No, the Hilton does not have an airport shuttle. SuperShuttle Express is available from Cleveland-Hopkins International Airport and the cost is approximately $35 each way. Reservations are optional.

Does the Hilton accept cash?

The Hilton is cashless and accepts credit or debit cards, room charges, and cash cards for payment. ReadyCredit kiosks are located in the business center (Lobby Level) and on the 32^nd floor. They can be used to convert cash to a prepaid VISA debit card at no cost.

Are additional ADA rooms available at other hotels?

If the Hilton is sold out of ADA rooms, the nearby hotels listed below may be able to assist. The distance to the Hilton is indicated in parenthesis. BDSRA does not have a group rate at these hotels.

• Cleveland Marriott, 1360 W. Mall Drive (.13 miles) – P: 216-696-9200
• Drury Plaza, 1380 East 6th Street (.22 miles) – P: 216-357-3100
• Westin Cleveland, 777 St. Clair Ave., NE (.25 miles) – P: 216-771-7700
• Hotel Indigo, 651 Huron Road (.52 miles) – P: 216-377-9000

REGISTRATION

What activities have been planned for the SIBs and LGO?

SIBS – Thursday evening: Game Night & Snacks; Friday evening: Roller skating with Dinner; Saturday: Trip to the Zoo with Lunch

LGO – Friday afternoon: Botanical Garden, Saturday: Mimosa & Canvas

I registered to attend virtually, but I would like to attend in person.

Please email Debra Marshall at debra@sswmeetings.com.

I’m interested in attending virtually. Will all the sessions be live-streamed?

A limited number of sessions will be live-streamed.

Why are colored bars on some of the name badge holders?

The colored bars indicate the type of Batten disease that affects each person’s family.

SCHOLARSHIPS

Are scholarships available this year?

Yes, a limited number of stipends are available. Current BDSRA members with families who have a loved one or who have lost a loved one to Batten disease are eligible. Applications are due by May 13, 2022. Apply here to submit your request.

When will I be notified if I have been selected to receive a scholarship and what will it cover?

Scholarship recipients will be notified no later than May 20, 2022. Stipends include one room for up to three nights, and lunch and dinner on Friday and Saturday of the conference.

Are any scholarships available for Canadian residents?

Canada BDSRA is sponsoring hotel and meals for anyone interested in attending the Conference. Please reach out to canadabdsra@gmail.com to inquire.

VOLUNTEERS

Are volunteers needed?

Yes, volunteers are needed to assist with registration and childcare, assemble conference materials, chaperone the SIBs events, and help with the parade on Saturday evening.

Who should I contact if I’d like to be a volunteer?

Please contact patrick@bdsrafoundation.org.

OTHER

What is the Sibs Program?

The Sibs Program is an incredible support system created by people who also grew up as “unaffected” brothers and sisters in Batten families. The annual conference is the foundation for the lifelong bonds and connections formed between sibs, who share a home life that others may not understand.

What is the Celebration of Life?

The Celebration of Life is a time to honor those we have lost to Batten disease.

I have special dietary needs, what should I do?

If you indicated this in your registration, you will receive a card with your badge and meal tickets that indicates your dietary need. At each meal, give this card to a member of the waitstaff. They will bring your meal and return the card for future use. If you did not indicate it in your registration or receive a card, please inform Debra at the conference registration desk.

How to I access the conference Mobile App or Web Platfor,?

Get the full experience of the Annual Conference by accessing the mobile app or web-based platform by networking with other attendees, exploring the agenda and chatting virtually.

• CLICK HERE to download the mobile app or web-based platform.
  • You will be able to join the conference sessions from the platform.
  • If you utilized the conference mobile app previously, you already have an account and may login with your existing email and password. If you do not remember your password, you will be able to reset.
  • If you are a new user:
    • Enter your email address and click CONTINUE.
    • You will be prompted to enter a password and confirm it. This will sign you up and allow you to access the platform.
  • Once you login to your existing account or create a new profile, you will be prompted for the event code: SPACEMAN