When

Thursday, August 24, 2017 at 9:00 AM PDT
-to-
Friday, August 25, 2017 at 4:00 PM PDT

Add to Calendar 

Where

UCLA (TBD) 
330 De Neve Drive,
Los Angeles, CA 90095
 

 
Driving Directions 

Contact

Lale' Welsh 
NDF (Neuromuscular Disease Foundation) 
310-736-2978 
info@curehibm.org 

 

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.

 

  • Dr. Ichizo Nishino, National Institure of Neuroscience, Toyko, Japan
  • Dr. Stella Mitrani-Rosenbaum, Hadassah Medical Center,     Jerusalem, Israel
  • Dr. Hanns Lochmuller, Disease Monitoring Program (DMP), Newcastle upon Tyne, UK   "What Did We Learn From The International Disease Program"? 
  •  Dr. Tahseen Mozaffar, Univeristy of California Irvine, Irvine, California
  • Dr. Marjan Huizing, National Institutes of Health (NIH), Bethesda, Maryland. 
    “Update on NIH Phase 2 study of ManNAc in GNE Myopathy”
  • Dr. Stan Krolczyk, Senior Medical Director Medical Affairs, Ultragenyx, Novato, CA    "Update on Ultragenyx Phase 2/3 of Sialic Acid" 
  • Dr. Madhuri Hegde, Perkin Elmer, Atlanta, GA
  • Panelists: Dr. Siavash Kurdestani, Dr. Perry Shieh, Dr. Wayne Grody. 

 

  • 6:30-10:30 p.m. Dinner & Cocktails and with the Scientists. (Symposium attendees and NDF supporters invited). 
  • Guest Speaker: Dr. Zohar Argov (Hadassah) on Gene Therapy. 

 

 

August 25th, 2017: Day 2 Agenda

DAY 2: Patient's Breakout sessions.  All-day 9 a.m.-4 p.m.

Note: 9 a.m.-1 p.m. Patients & Family Members will be on same track together.  

6-8:45 a.m. Breakfast in Carnesale Commons Dining Hall

9 a.m.  Workshop: Mark: Stretching, Yoga & Exercise 

10 a.m. Workshop: Kim Mooney presents: Resource Utilization Tools 

11 a.m. Workshop Nutrition: and Meditation for GNEM Patients & Family Members and/or caregivers. 
Presented by: Dr. Sepideh Tabibian (M.D. NDF Board Member & GNEM Patient) 

12 p.m. Lunch with all attendees

 1-3:30 p.m.  Interactive Patient ONLY. Break-out Discussion with Dr. Gretchen 

 2:30–4 p.m. Patient-led Discussion Group. Private for Patients ONLY. 

4 p.m.  Fill out & present forms, Travel Scholarship paperwork, w9s etc. turn into Nancy, Jon, Amy, and Tara at exit. 
*All awardees must attend all events in order to comply with eligibility requirements for Scholarship check refunds. 

ADJOURN. 

 Free activity for all attendees. For questions about dining options please contact your certified patient advocates.

Contact details:   Tara: 831-728-3680

                             Amy: 215-720-5482

                             Jon: 610-547-0816

 

 

DAY 2: Family Member/Caregiver Sessions. All-day: 9 a.m.–4 p.m. 

 Note: 9 a.m.-1 p.m. Patients & Family Members will be on same track together. 

 6-8:45 a.m. Breakfast in Carnesale Commons Dining Hall

9 a.m.  Workshop: Mark: Stretching, Yoga & Exercise  

10 a.m. Workshop: Kim Mooney presents: Resource Utilization Tools 

11 a.m. Workshop: Nutrition and Meditation for GNEM Patients & Family Members and/or caregivers. 
Presented by: Dr. Sepideh Tabibian (M.D. NDF Board Member & GNEM Patient) 

12 p.m. Lunch with all attendees

1 p.m. Session with Carol Gelbard (NDF Board Member & Family Member of GNEM Patient)

 2:30 p.m. Workshop: Kim Mooney presents: Resource Utilization Tools for FM/Cs.

4 p.m. Fill out & present forms, Travel Scholarship paperwork, w9s etc. turn into Nancy, Jon, Amy, and Tara at exit. 
*All awardees must attend all events in order to comply with eligibility requirements for Scholarship check refunds. 

ADJOURN. 

 

 

DAY 2: SCIENTISTS ONLY.  All-day: 9 a.m.-3 p.m. 


9 a.m. Breakfast

 10 a.m. Consortium & Data Sharing Discussion by Ralph Loren to Scientists, Physicians, Industry Professionals & NDF Board Members ONLY.  

 12 p.m. Lunch (TBD)

 1 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.

 

Luxe Sunset Boulevard Hotel

Address: 11461 Sunset Blvd, Los Angeles, CA 90049 (2 miles from UCLA)

Phone: (310) 476-6571

 

Hotel Angeleno

Address: 170 N Church Ln, Los Angeles, CA 90049 (2 miles from UCLA)

Phone: (310) 476-6411

 

W Los Angeles-Westwood

Address930 Hilgard Ave, Los Angeles, CA 90024 (1 mile from UCLA)

Phone(310) 208-8765