July 28 - 31, 2016Embassy Suites Hotel, Omaha, NE

United Leukodystrophy Foundation

Family Conference

This ULF Family Conference will bring together families and

medical professionals across all of the leukodystrophies.

Don’t miss this opportunity to learn, share, and connect!

Wills & guardianshipPain managementDisability rightsSymptom managementAdvocacySocial services

MobilityBone healthStress relief/managementYoga for patients & caregiversAcupunctureDynamics of grief

Thursday, July 287:00 am - 8:00 amRegistration

8:00 am - 8:15 amWelcome, Announcements, and Introductions

8:15 am – 9:15 amSummaries of Known Leukodystrophies

9:15 am - 10:15 amBreak-out Sessions

10:15 am - 10:30 amBreak

10:30 am - 11:15 amBreak-out Sessions

11:15 am - 12:00 pmDietary Treatments for Leukodystrophies and Healthy Living

12:00 pm - 1:00 pmLunch

1:00 pm - 2:00 pmPsychological Aspects of Leukodystrophies

2:00 pm - 3:00 pmNursing Care for Leukodystrophies

3:00 pm – 3:15 pmBreak

3:15 pm - 4:15 pmLeukodystrophy Genetics and Reproductive Planning

4:15 pm - 5:15 pmBiochemistry of ALD/AMN

6:00 pm - 7:00 pmDinner and “Meet the Professionals” 7:00 pm - 8:30 pmInformal Group Discussions for Families and Doctors: • Vanishing White Matter • ALD Carriers • AMN Men • AMN Wives • YAC and Youth Group

Friday, July 297:00 am - 8:00 amRegistration

8:00 am - 8:15 amWelcome and Announcements

8:15 am - 9:00 amLeukodystrophy Clinics

9:00 am - 10:30 amMultidisciplinary Care of Leukodystrophies

10:30 am - 10:45 amBreak

10:45 am - 12:30 pmUpdates and Emerging Therapies for Leukodystrophies I:

• How can PMD be treated? • Canavans Disease • Alexander Disease

Additional Break-out Sessions

12:30 pm - 1:30 pmLunch and Announcements

1:30 pm - 3:00 pmUpdates and Emerging Therapies for Leukodystrophies II: • POLR3-related Leukodystrophy • Vanishing White Matter • Metachromatic Leukodystrophy

Bladder Problems and Erectile Dysfunction in Men with AMN �3:00 pm - 3:30 pmBreak

3:30 pm - 5:00 pmUpdates and Emerging Therapies for Leukodystrophies III: • Krabbe Disease • CALD/AMN/ALDH

AMN Informal Group Discussion with Urologists

5:00 pm - 5:20 pmAwards and Grant Announcements

6:00 pm – 9:00 pmDinner and Auctions

Break-out Topics

Conference Agenda

Saturday, July 308:30 am - 9:15 amSummary of Scientific Sessions with Q&A

9:15 am – 10:15 amDiscovery of New LeukodystrophiesAdditional Break-out Sessions

10:15 am - 10:30 amBreak

10:30 am - 11:15 amCells, Fish, Fruit Flies, Mice, Rats, and other Models for LeukodystrophiesAdditional Break-out Sessions

11:15 am – 12:00 pmNew Clinical Trials

12:00 pm - 1:45 pmLunch and Memorial Service

1:45 pm - 2:30 pmUpdate on Newborn Screening for the Leukodystrophies

2:30 pm - 2:45 pmBreak

2:45 pm - 3:45 pmExercise Therapy and Motion Study

3:45 pm - 4:00 pmConcluding Remarks and Zoo Information

4:00 pm - 6:00 pmFree Admission at the Zoo (on your own)

7:00 pm - MidnightScott Aquarium at the Omaha’s Henry Doorly Zoo and Aquarium

Sunday, July 318:00 am - 10:00 amInformal Breakfast and Socializing

We will meet at the beautiful Embassy Suites Downtown/Old Market in Omaha, Nebraska. The room rate is $129, plus taxes. Accessible rooms are available. The rate includes the free, daily breakfast buffet and evening cocktails from 5:30 to 7:30 pm.

Great topics and speakers, new event features, roundtable discussions, memorial ceremony, silent and live auctions, award ceremony, and much more!

Children attend at no charge, and there will be free childcare offered day-time hours Thursday through Saturday. On Friday, a field trip to the Omaha Children’s Museum is planned for those kids who are interested.

A fabulous wrap-up celebration for everyone will be held at Omaha’s Henry Doorly Zoo and Aquarium. Enjoy the antics of penguins and the thrill of cocktails and dinner under the shark tunnel on Saturday night! Plan to depart on Sunday, the 31st.

You might choose to add on a few days to enjoy the many attractions that Omaha has to offer, such as the Joslyn Art Museum – featuring Monet, Pollack, & Chihuly – air show on July 31, riverboats, Lauritzen Gardens, sporting events, and the Durham Museum, which is the 1931 Union Station with fascinating train exhibits, just 2 blocks from our hotel.

This multi-day schedule is subject to minor changes.

First & Last Name(s):

Children’s First & Last Name(s) and ages:

Address:

City: State: Zip:

E-mail: Phone:

Please check all appropriate boxes below for meal planning purposes.The cost of all meals is included with your registration fee.

Lunch Information Dinner InformationThursday, July 28th Thursday, July 28thFriday, July 29th Friday, July 29thSaturday, July 30th Saturday July 30th

Vegetarian Gluten-free

Hotel & Travel InformationThe Embassy Suites Omaha Downtown/Old Market check-in is 3:00 pm. Check-out is 12 noon. The hotel provides a complimentary breakfast buffet and evening Happy Hour from 5:30 pm - 7:30 pm.

Hotel room costs are to be paid directly to the hotel. Contact the hotel to reserve a room in the ULF room block. Registration fees do not include hotel, travel, parking or airport transportation.

This registration form can be sent to: United Leukodystrophy Foundation 224 N. Second Street, Suite 2DeKalb, IL 60115

or FAX registration form to: 815-748-0844 Please submit this form with a credit card or check payable to the ULF or register online.Member registration rate

$235 x # of persons Not a member? Join ULF. Add $35 Early bird registration rate closes June 17, 2016

$250 x # of persons Registrations received after June 17, 2016 $350 x # of persons

No fee for children, and childcare will be provided at no additional cost. All registration fees are non-refundable. Check enclosed Charge my MasterCard Visa AmEx Discover

Name on Card

Card #

Exp. Date CVV

Signature

If interested, please bring an item for our auction. All proceeds benefit the ULF. All photos may be used by the ULF unless you check NO here

224 N. Second Street, Suite 2DeKalb, IL 60115

ADDRESS SERVICE REQUESTED

!

Registration closes July 11, 2016Have questions? Call 800-728-5483 or email Sofiana@ulf.org

Register online at: www.ulf.org/conference

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