When

9;00 AM August 31st - 2 PM Sept. 1st, 2016
Add to Calendar

Where

UCLA/Covel Commons >

COVEL COMMONS
HORIZON BALLROOM

330 De Neve Drive
Los Angeles, CA 90095

Driving Directions

Contact

NDF
(310) 736-2978
info@ndf-hibm.org

This Event sponsored by Ultragenyx Pharmaceuticals

Where

UCLA/Covel Commons >
330 De Neve Drive
Los Angeles, CA 90095

DIRECTIONS TO EVENT TO GET TO UCLA:

1.If you are coming from California Head west on I-405 N

Take exit 57A for Sunset Blvd

0.3 mi

Use the right 2 lanes to turn right onto Sunset Blvd

0.8 mi

Turn right onto Bellagio Dr

0.1 mi

Turn left onto De Neve Dr

2. If you are coming from W Magnolia Blvd and I-405 S

Head south on College Rd S

0.2 mi

Turn right onto Burbank Blvd

0.6 mi

Turn left onto Woodman Ave

0.5 mi

Turn right onto W Magnolia Blvd

2.0 mi

Turn left onto Sepulveda Blvd

0.8 mi

Turn right onto Ventura Blvd

0.2 mi

Turn right to merge onto I-405 S

6.0 mi

Take exit 57 toward Sunset Blvd

0.1 mi

Turn left onto N Church Ln

410 ft

Turn left at the 1st cross street onto Sunset Blvd

0.9 mi

Turn right onto Bellagio Dr

0.1 mi

Turn left onto De Neve Dr

3. If you are coming from US-101 N and I-405 S

Head south on College Rd S

0.2 mi

Turn right onto Burbank Blvd

0.6 mi

Turn left onto Woodman Ave

1.1 mi

Turn right to merge onto US-101 N

0.2 mi

Merge onto US-101 N

1.7 mi

Take exit 19A to merge onto I-405 S toward Santa Monica

7.0 mi

Take exit 57 toward Sunset Blvd

0.1 mi

Turn left onto N Church Ln

410 ft

Turn left at the 1st cross street onto Sunset Blvd

0.9 mi

Turn right onto Bellagio Dr

0.1 mi

Turn left onto De Neve Dr

Park at Sunset Village Parking Lot

Get parking pass from parking attendent they will be there from () to ()
If attendent is not there go to pay box and get parking pass
Leave parking pass in car window to avoid getting a ticket

Take elevator to 2nd floor make a right till the end of the building than take a left. Stop turn left into the double doors the stairs are stight ahead and the elevator is to the (left?) take either or up to the 3rd floor.

Once on the 3rd floor go to the tables and sign in. Once you have signed in you will enter the room to start and mingle.

NDF's ANNUAL GNE MYOPATHY (HIBM) SYMPOSIUM

AUGUST 31st- Sept 1st, 2016 @UCLA

Please join us for NDF's third annual GNE Myopathy (HIBM) symposium designed exclusively to bring patients, their families and caretakers together with phsycians and scientists for 2 days of news and information. The focus of this event to raise awareness, educate, enageg and inform all stakeholders about the most up to date state of GNE Myopathy (HIBM).

This event is FREE to patients and their families/caretakers, as well as to scientists, and is NOT a fundrasier. We respect your privacy, and while we encourage transparency and frank, open discourse so we can best aid our constituents, we also foster your choice to use an alias at these events. (See Badge name.)

Day 1 (AUGUST 31st)

AGENDA Wednesday 8/31 ONLY

9:15-10:00 Dr. Madhuri Hegde Emory Genetics

10:00-10:30 Dr. Stan Krolczyk Ultragenyx, on "Clinical Trials for GNE Myopathy"

10:30-11:30 Dr. Marjan Huizing NIH, Presents "NIH Clinical Studies on GNEM & ManNAc"

11:30-12:00 Andy Kogelnik. Open Medicine Institute. On "Precision Medicine, Collaboration and Genomics in the Digital Age"

12:00-1:15 PM Lunch & Conversation on the terrace

1:15-2PM Interactive Panel Discussion with Scientists & Industry Professionals:

Dr. Wayne Grody, (UCLA) Dr. Carmen Bertoni (UCLA Genetics) Marjan Huizing (NIH), Pete Curry, (Ultradgenyx) Andy Kogelnik (Open Medicine Institute). Dr. Daniel Darvish.

Moderated by Dr. Gretchen Kubacky.

2:00-4PM Break out Sessions:

2:00-4PM Scientists/Industry ONLY private session (Salon D) . moderated by Dr. John Hakimi (NDF Scientific Advisory Board).

2:00-4PM Patient Session (Salon B) Led by Gretchen Kubacky Psy.D

2:00-4PM Family/Caretaker Session, (Salon A) Led by Judy Clingman, MFT

Attendees: John Hakimi (Moderator, SAC) Stan Korlczyk, Pete Curry, Marjan Huizing (NIH), Madhuri Hegde, Kathy Shenassa (UCLA, NDF SAC), Wayne Grody (UCLA, NDF SAC). Carmen Bertoni. Laura Rufibach,(JAIN Foundation-by phone). Dr. Tahseen Mozaffar (UCI) 4:30-6PM

4:00-4:15. Questionnaires, for NDF Impact Study.

***Break***Until 6PM.

6PM Wine & cheese Reception GRAND HORIZON BALLROOM Covel Commons

(Free event. Open to all symposium Registrants).

6:30PM Program begins: Billy Harris, Emcee & Lale' Welsh Welcome guests
6:45 Acknowledgements & Announcements, NDF Co-Presidents, Emanuel Yashari & Carolyn Becher

7:55 From Our Sponsor: Mehrak KianKarimi (Ultragenyx) on Highlights from the Quest for Rare Disease
Thank Ultragenyx & Beverly Hills Commission, Rotary Club of Beverly Hills
NDF Happy 10th Birthday

7:15 Dr. Carmen Bertoni, UCLA, NDF scientific Advisory Board "Gene Therapy & the future of genetics"

7:25 PM Billy Harris Introduces NDF Film: "Bracing for Life"
7:35 Billy Harris Moderates Q&A with Patients & Producers.

7:45 Dinner & Music under the stars, Grand Horizon Ballroom Terrace. (All Symposium Attendees Invited).

Day 2 (Sept. 1) Free to Patients and Familymebers & Caretakers.

9:00 Yoga Instruction* with a physical education expert for patients and their families (see below for information on Intructors)

10:00 Massage & stretching*

11:00 Wellness through Nutrition Workshop**

12:00 Lunch in Covel Dining

Paid private sessions with physical education experts available at your home or hotel. Reservations recommended directly with the following instructors. (NDF does not receive funds from these transactions; only makes them available as a service to our patient population.)

*Mark Clements

Adapted Physical Education Coordinator

Monterey Peninsula College

M.A., Physical Education--Emphasis in Adapted Physical Education & Exercise Physiology, California State University, Long Beach (1985)

California Specialized Credential Learning Handicapped, California State University, Los Angeles (1989)

Additional educational coursework in Rehabilitation from University of Washington, Seattle (1992).

Over thirty years of experience working with individuals with disabilities ranging from kindergarten through post-secondary in adapting exercise, fitness, physical education and sports in educational and private settings. Diverse experiences in working with individuals transitioning from rehabilitation settings as well as with high caliber athletes. Extensive background in applying biomechanical analysis in functional training and performance enhancement.

**Zamia Cohen

Tier X Coach at Equinox Fitness Club (West LA)

B.A., Biology with a minor in Chemistry, Lake Forest College, IL (1999)

M.S., Physiology, Penn State University, PA (2002)

Certified Personal Trainer and Wellness Coach - 13 years of experience focusing on Movement, Nutrition, Stress Management, Sleep and Regeneration. Special areas of focus are strength training and conditioning, pre/rehabilitation (both medical and orthopedic)/corrective exercise/pain management, body composition and pre/post-natal.

Move Better - Feel Better - Live Better