When
Thursday, August 24, 2017 at 9:00 AM PDT-to-
Friday, August 25, 2017 at 4:00 PM PDT
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Sponsors and Partners
Support the NDF
Support the Neuromuscular Disease Foundation (NDF) by using smile.amazon.com every time you shop online through Amazon. The AmazonSmile Foundation will automatically donate 0.5% of the purchase price at no cost to you each time you make eligible purchases. Just type in Neuromuscular Disease Foundation as your designated recipient and Amazon will do the rest. Visit www.CUREHIBM.org to learn more about us.
NDF Symposium on GNE Myopathy at UCLA
Please join us for our 4th Annual Symposium on GNE Myopathy (HIBM), a two-day, fact and fun-filled event including up-to-the-minute information, presentations, panel discussions, and individualized breakout groups for patients; caregivers; and scientists/physicians, and industry professionals. Meals will be provided for all attendees.
***PLEASE NOTE: AGENDA IN PROGRESS: Subject to change***
August 24th, 2017: Day 1 Agenda 9 a.m.-4 p.m.
***Please note: Breakfast location has been changed to coincide with Registration and begins at 8:00 AM***De Neve Commons - 3rd floor foyer
8:00 a.m. Registration & Breakfast begins at De Neve Commons - 3rd floor foyer
9:00 a.m. Welcome remarks by Lale’ Welsh, Executive Director, NDF
9:30 a.m. Dr. Nishino, National Institute of Neuroscience, Tokyo, Japan
10:00 a.m. Dr. Lochmuller, Newcastle upon Tyne, UK (Natural History-DMP)
10:30 a.m. Dr. Stella Rosenbaum, Hadassah Medical Center, Jerusalem, Israel
11:00 a.m. Dr. Marjan Huizing, National Institutes of Health (NIH),
Update on NIH Phase 2 study of ManNAc in GNE Myopathy
11:45 a.m. Lunch with all attendees at De Neve Plaza Patio
1:30 p.m. Testing for GNE myopathy – new trends in genetic testing
Dr. Madhuri Hegde, Perkin Elmer, Atlanta, Georgia
2:00 p.m. Dr. Siavash Kurdistani, UCLA, Los Angeles, California
2:30-4:00 p.m. Interactive Panel Discussion with Dr. Perry Shieh, Dr. Laura Rufibach, Dr. Stan Krolczyk, Dr. Zohar Argov, Dr. Mozaffar, Dr. Shin.
***A 2 hour break followed by dinner***
6:00-10:30 p.m. Dinner & Cocktails and with the Scientists. (Symposium attendees and NDF supporters invited).
Guest Speaker: Dr. Jerry Mendell on Gene Therapy from Nationwide Children’s Hospital in Columbus, Ohio.
End Day 1.
August 25th, 2017: Day 2 Agenda
DAY 2: Patients, family members, and caregivers follow the same schedule from 9 a.m.-1:15 p.m.
8:00-10 a.m. **Breakfast location now changed to De Neve Commons Foyer 3rd floor Foyer
9:00 a.m. Workshop with Mark Clements: Stretching, Yoga, & Exercise
10:00 a.m. Workshop with Dr. Sepideh Tabibian (M.D., NDF Board Member, & GNEM Patient): Nutrition and Meditation for GNEM Patients & Family Members and/or caregivers.
11:00 a.m. Workshop with Kim Mooney (Ultragenyx): Interactive Discussion of Healthcare Utilization Tools
12:00 p.m. - 1:15 p.m. Lunch with all attendees at De Neve Plaza Patio
Track 1: Patients ONLY afternoon 1:15 p.m. -4:30 p.m.
1:15-2:45 p.m. Dr. Gretchen Kubacky Patient ONLY Break-out Discussion
2:45 p.m.–4 p.m. Patient-led Discussion Group. Private for Patients ONLY.
4:00 p.m.-4:30 p.m. Please meet in the foyer to turn in all documentation. Adjourn.
*All awardees must attend all patient-centered events in order to comply with eligibility requirements for scholarship reimbursement.
Track 2: Family/Caregiver ONLY afternoon 1:15 p.m. - 4:30 p.m.
1:15 p.m. -2:45 p.m. Session with Carol Gelbard (NDF Board Member & Family Member of GNEM Patient)
2:30-4 p.m. Session with Dr. Roxanna Rahban (NDF Board Member)
4:00 p.m.-4:30 p.m. Please meet in the foyer to turn in all documentation. Adjourn.
*All awardees must attend all events in order to comply with eligibility requirements for Scholarship check refunds.
Friday night is an open schedule for all attendees. For questions about dining options and free activities, please contact your certified patient advocates.
Contact details: Tara: 831-319-2072
Amy: 215-720-5482
Jon: 610-547-0816
Track 3 SCIENTISTS ONLY.
Day 2: 9 a.m.-3:00 p.m.
8:00 a.m - 10:00 a.m. **Breakfast location now changed to De Neve Commons Foyer 3rd floor Foyer**
10:00 a.m. Consortium & Data Sharing Discussion by Ralph Loren for scientists, physicians, industry professionals & NDF Board Members ONLY.
12 p.m. Lunch with all attendees at De Neve Plaza Patio
1:15 p.m. Ralph Loren moderates open discussion about GNEM among scientists only and professional stakeholders by Invitation ONLY.
3 p.m. Adjourn
Lodging Information
Lodging for overnight guests of NDF will be provided at UCLA. Other attendees are welcome to contact NDF for accommodations at UCLA.
Additional nearby hotels are available for your booking. These include:
Address: 425 Westwood Plaza, Los Angeles, CA 90095
Phone: (855) 522-8252
*Before booking at the UCLA Luskin Center, contact NDF for the information on blocked rooms for the conference.
Address: 11461 Sunset Blvd, Los Angeles, CA 90049 (2 miles from UCLA)
Phone: (310) 476-6571
Address: 170 N Church Ln, Los Angeles, CA 90049 (2 miles from UCLA)
Phone: (310) 476-6411
Address: 930 Hilgard Ave, Los Angeles, CA 90024 (1 mile from UCLA)
Phone: (310) 208-8765