FAPG MEMBER TRAVEL GUIDELINES TO UCLA AND CHOP

ORGANIZED AND MAINTAINED PERSONALLY BY PAUL KONANZ

Ø      Introduction: Dr. Perlman’s UCLA office and Dr. Lynch’s CHOP office are hubs of ataxian medical care in the USA, with many people traveling to these offices every year. This travel guideline is to share commonly available travel information with Friedreich’s Ataxia-involved families anticipating a trip to either location. It is not connected to any particular medically-organized activity or effort that may be underway at either site. This is intended to generally orient a family to parameters surrounding a visit to these locations; if you are planning to participate in any medically-organized activity or effort the doctor’s support staff will have specific information and processes for you. This guide may aid you in that conversation but is completely supplemental and secondary to the direct information gained through a doctor’s staff and/or services.

Ø      Reminder: no one knows your ataxian as well as you. You are their planner, protector and advocate. You have the responsibility to communicate clearly, double-check frequently and speak emphatically as to their traveling needs. Every trip with an ataxian is an adventure; and some trips may be no fun at all. Better planning suggests but does not guarantee better trips. The bottom line is for parents to be as clear as possible as early as possible about what their wants and needs are, all the while understanding that there may have to be some compromises along the way. Bad weather, flight limitations, and appointment calendars for instance may limit options and may mess up the best laid plans. Plan well, re-check often, and then be flexible, adaptable and of good humor; you’ll make it through in good fashion.

Ø      Airlines

§         Be sure you make your reservations as early as possible and that the travel agent delivers the itinerary to you as soon as possible to allow you to review it and question any aspect that may not be in the best interests of your child.

§         If your child has trouble walking or has travel pain issues do push for a direct flight. A tired, in pain, or end-of-their-rope child (not to mention parent) will not perform well in any trial, survey testing or clinic visit. You know your child best and you are their best advocate!

§         Direct flights are not always the best choice. A 6am direct flight for 2 ½ hours may be worse than a 1 stop 4 hour flight set that starts at 11am. Make a balanced decision for the best overall trip.

Ø      Airport Transportation

§         LAX (UCLA medical Center is 20 minutes and 11 miles north on US405) http://www.mapquest.com/maps/LAX:los+angeles+ca/10833+Le+Conte+Ave+%2523+37-121CHS+Los+Angeles+CA+90095/

.          No hotel courtesy shuttles (see below)

.          Commercial lift-equipped shuttle?

.          Rental car

.          Taxi

  §      PHL (CHOP is 17 minutes and 9 miles north)                  http://www.mapquest.com/maps/8800+Essington+Ave+philadelphia+pa/324+S+34th+St+Philadelphia+PA+19104-5400/

.          Lady Liberty shuttle makes hotel drop-offs.

.          Other alternative shuttles?

.          Rental car

.          Taxi

Ø      UCLA area preferred hotels (all have accessible rooms)

§         Tiverton House: 310-794-0280

.          Map: http://www.mapquest.com/maps/900+Tiverton+Ave+los+angeles+ca/  Medical Plaza 300 (Dr. Perlman’s office) is 1 block west and ½ block north.

.          No LAX shuttle.

.          UCLA medical center shuttle is on call and typically arrives within 15 minutes of requesting it at the front desk.

.          Weekdays complimentary breakfast (2^nd floor) 6:30am – 10am.

.          Several reasonable eateries within a block plus order-in food from the front desk.

§         Royal Palace Hotel: 310-208-6677

.          Map: http://www.mapquest.com/maps/1052+Tiverton+Avenue+los+angeles+ca/  Medical Plaza 300 (Dr. Perlman’s office) is 1 ½ blocks north, 1 block west and ½ block north

.          No LAX shuttle.

.          UCLA medical center shuttle is on call and typically arrives within 15 minutes of requesting it at the front desk.

.          Weekdays complimentary breakfast 7am – 10am.

.          Several reasonable eateries within a block plus order-in food menus in each room.

§         Angelino Hotel: 310-476-3701 (Quite nice with a pool; posh)

.          Map: http://www.mapquest.com/maps/170+N+Church+LN+los+angeles+ca/   Medical Plaza 300 (Dr. Perlman’s office) is 2 miles east by shuttle.

.          No Lax shuttle

.          Complimentary shuttle service to UCLA. Reserve it the day before.

.          No complimentary breakfast; hotel restaurant opens 6:30am (breakfast $20 - $30)

.          Lobby “café” coffee shop has sweet rolls.

.          No eateries within walking/wheelchair range. Order-in available from the front desk.

Ø      CHOP area hotels

§         The Sheraton University City Hotel (Primary): 215-387-3000

.          Map: http://www.mapquest.com/maps/200+N+17th+St+Philadelphia+PA+19103-1202/  . 400 S. 34^th St. (Dr. Lynch’s office) is 2.2 miles southeast by shuttle.

.          PHL shuttle service to the hotel?

.          Hotel to CHOP transportation?

§         The Penn Tower Hotel (Backup): 215-387-8333

.          Map: http://www.mapquest.com/maps/399+S+34th+St+Philadelphia+PA+19104-4316/

.           No PHL shuttle. Private Lady Liberty shuttle is available.

.          CHOP is directly across the street. No shuttle necessary.

.          No complimentary breakfast. No hotel restaurant. Hotel lobby has a small café with continental breakfast items and sandwiches.

.          CHOP has cafeterias. Some eateries within walking/wheelchair range. Order-in available from the front desk.