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UPCOMING NDF EVENTS:
Please check our site for updates.
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Please support our sponsors:
Ultragenyx
Beverly Hills Rotary
Global Genes
IAJF New York
News Flash:
The Iranian American Jewish Federation (NY) now directly supports NDF's efforts towards gene therapy!
Want to be part of our solution? Check out the many ways in which you can join our global effort for a cure by clicking here.
Symposium 2016 Photos
Patients, Family, and Friends
Speakers
For more event pictures visit Curehibm.org
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NDF's Impact
"NDF has not only raised awareness about HIBM, but has played a central role in bringing researchers of diverse background from all over the world together to collectively tackle this devastating disease. NDF has also promoted greater communication between researchers, patients and patient advocates, bringing a sense of community to those who suffer from the disease and the people who care about finding a cure."
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Siavash Kurdistani, MD, Professor and Chair, UCLA Department of Biological Chemistry
"I am thankful for NDF's help in eliminating the isolation felt by patients and for providing vital information to us and our caregivers. Their website and events are relevant and engaging. Most importantly, NDF empowers patients and carers to keep driving for change and to never give up hope."
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Mona Patel, GNEM Patient, Manchester, England
"It is invigorating seeing that NDF tirelessly works towards a cure and is a constant advocate for the GNE Myopathy patients throughout the year, every year. Thank you NDF for never giving up on reaching for a cure and being a champion for GNE Myopathy patients around the world.
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- Debbie Scott, GNEM Patient, Irvine, California
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Please forward this email to a friend who needs to know about NDF!
Gala Beverly Hills
Check out more event photos on our site.
NDF Symposium 2016
NDF Staff, Volunteers & Ambassadors
wish you a healthy, happy summer! |
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Tips
- Weather: The most informative site for weather in Los Angeles, California in August can be found here. Los Angeles averages a daily maximum temperature for August that's between 81 and 87 degrees Fahrenheit (27 to 31 degrees Celsius). The minimum temperature usually falls between 62 and 66 °F (17 to 19 °C).
- Nearest Hospital: Ronald Reagan Medical Center located on the UCLA campus.
- Laundry Facilities: Each building in De Neve Commons is equipped with laundry facilities on the first floor. Half of the De Neve Commons laundry facilities use Bruin Cards and half of the De Neve Commons laundry facilities use quarters.
- Vending Machines: Vending machines are located on the main floor and near the Plaza second floor in De Neve Commons.
- Beauty Salon: The Aveda Institute located next to the UCLA campus provides full salon services done by supervised students participating in the best cosmetology education program available.
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Local Medical Supply Rental Company
Sherman Oaks Medical Supply
Phone Number: 818-981-9906
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Nearby Restaurants
There are many restaurants serving diverse international cuisines located in Westwood Village, UCLA campus.
Yelp's picks for best restaurants in Westwood Village:
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Lots of easy ways to help NDF
We've learned something about you in ten years, and it is that you, our supporters, are a mix of all stakeholders in this debilitating disease. You are our patients, carriers, family members, caregivers, volunteers, sponsors and donors alike. Each of you has done what you can to demonstrate loyalty year after year. We thank you and let you know that, while we still need your support, we've done what we can to make giving easier.
Please click here
to find out about our annual giving levels and to learn about giving incrementally throughout the course of the year at a level that fits within your family's budget.
Every dollar counts!
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The 4th Annual NDF Symposium on GNE Myopathy will be here before you know it!
In this newsletter, we tried to think of everything you might want to know and more.
If you have any further questions, please do not hesitate to email us
here.
We look forward to seeing you soon.
Lale' Welsh
Executive Director, NDF
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Accessible Shuttle from LAX to UCLA
Please make reservations at least 2 days prior to your need for the shuttle. Here is a link for the Super Shuttle that you may use to get a 10% discount:
Accessible Taxi Companies
1) Beverly Hills Taxi Cab
Phone number: 1-800-273-6611
2) Yellow Cab Co., Westwood, Ca.
*Approximate distance from LAX to De Neve at UCLA is 13 miles/21 kilometers.
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UCLA Address and Interactive Map
UCLA Interactive Map:
*Please note that Adobe Flash Player is needed for the interactive map.
UCLA maps:
351 Charles E Young Drive West
Los Angeles, CA 90024
*Patients, family members, and caregivers who booked through NDF will be staying here.
425 Westwood Plaza
Los Angeles, CA 90095
*Scientists, academic professionals, and industry professionals who booked through the NDF will be staying here.
UCLA PDF maps to print
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UCLA Campus Shuttle Services
UCLA Campus Shuttle Services
Phone Number: 310-206-2908
- Campus Express - A full fleet of wheelchair lift-equipped buses follow round-trip routes from Weyburn Terrace to the MacGowan bus turn-around every ten minutes from 7AM to 7PM, Monday through Friday. The Northbound express has six stops and the southbound has five.
- Wilshire Center Express - A wheelchair lift-equipped bus operates with stops at the corner of Ashton and Midvale (the Wilshire Center), the corner of Le Conte and Tiverton and between Parking Structure 2 and Young Hall.
- Northwest Campus Shuttle- A wheelchair lift-equipped shuttle van operates from the MacGowan turnaround to Hedrick Hall weekdays at 11:30, 12 noon, 12:30, 1:00, 1:30 and 2:00.
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Parking at UCLA
- For day visitors: You will go to parking structure DD behind De Neve Commons to park. A parking attendant will be there in the morning to assist you from approximately 8 a.m. to 10 a.m. After those hours, visitors can enter through Westwood Blvd. and get their parking pass at the kiosk to put visibly in your car.
- For overnight patients, caregivers, and family members: You will be parking at structure DD behind De Neve Commons. You will receive your parking pass in your welcome pack when checking in. You will have to return to your car and put the pass visibly in your car.
- For overnight scientists, professionals, and industry partners staying at the Luskin Conference Center: Self-parking is available underneath the Luskin Conference Center and in UCLA Parking Structure 8, Level 4, directly across from the Center. This information can also be found here.
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Patient Greeting
Tara, Amy, and Jon will be doing their best to keep track of patients coming in on August 23rd. We would like to be able to greet each of you coming in to UCLA and to help you get checked in and find your rooms. We are here for any problem that may arise.
Since we are an international community, we would like to communicate with everyone using
WhatsApp. This way we do not have to worry about charges to anyone's cell phones.
We will use WhatsApp to communicate important messaages with you. These could include patient meet-ups outside of the schedule like breakfast as well as the shuttle to and from Carnesale Commons.
Contact details: Tara:
831-319-2072
Amy:
215-720-5482
Jon:
610-547-0816
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Patient Room Information
The following amenities will be available in each room:
- towels
- wash cloths
- shampoo
- conditioner
- soap
- cups
- wi-fi access
The following amenities can be borrowed by asking the front desk:
- hair dryer
- iron/ironing board
Accessibility:
ADA rooms with roll-in showers will have a built in bench area with grab bars.
ADA rooms with a tub/shower will be equipped with grab bars.
Scientist/Industry Professional Room Information
The following amenities will be available in each room:
- Toiletries
- Hair dryer
- iron/ironing board
- coffee maker
- in-room safe
- wi-fi access
For a complete list of amenities, please go
here.
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Meals
Meal tickets will be provided depending on your arrival and departure dates.
*Meals in bold print have changed since from the original agenda on the registration page.
Wednesday, August 23rd
- Dinner at Reiber Dining Hall
- Dining Hall Hours - 5 p.m. to 8 p.m.
Thursday, August 24th
- Breakfast followed by registration at the 3rd floor foyer of De Neve Commons starting at 8 a.m.
- Lunch during the Symposium at De Neve Patio Plaza
- Dinner with Scientists
Friday, August 25th
- Breakfast at the 3rd floor foyer of De Neve Commons starting at 8 a.m.
- Lunch during the Symposium at De Neve Patio Plaza
Saturday, August 26th
- Breakfast at Covel Commons Dining Hall
- Dining Hall Hours - 7:00 a.m. to 10:30 a.m.
*Attendees who would like to purchase additional meals can do so at the front desk of their hotel (CASH only).
Patient Shuttle to Meals
The distance between De Neve Commons and the
Reiber Dinig Hall is approximately 1050 feet (320 meters) and Carnesale Commons is approximately 500 (150 meters). We will provide a shuttle to
Reiber Dining Hall and Carnesale Commons for any individual who like to use the service. Please contact Tara, Amy, or Jon for more information.
Shuttle from Luskin to Meals and Symposium
The Luskin Conference Center will provide a shuttle to the dining halls and to the Symposium at De Neve Commons for anyone wishing to use the service.
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Attire
The Symposium days are business/casual, and the weather in LA is warm this time of year. It may be best to wear layers so that you can easily switch between outdoors and air-conditioned rooms.
The dinner on August 24th is a little more dressy, so feel free to wear something you would wear out to a nice dinner.
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Symposium Schedule and Speakers
The symposium features many presentations by scientists from all over the world including:
- Dr. Nishino, National Institute of Neuroscience, Tokyo, Japan
- Dr. Lochmuller, Newcastle upon Tyne, UK (Natural History-Disease Monitoring Program- DMP)
- Dr. Stella Rosenbaum, Hadassah Medical Center, Jerusalem, Israel
- Dr. Marjan Huizing, National Institutes of Health (NIH), Update on NIH Phase 2 study of ManNAc in GNE Myopathy
- Dr. Madhuri Hedge, Perkin Elmer, Atlanta, Georgia, Testing for GNE Myopathy - new trends in genetic testing,
- Dr. Siavash Kurdistani, UCLA, Los Angeles, California
- Interactive Panel Discussion with Dr. Perry Shieh, Dr. Laura Rufibach, Dr. Darvish, Dr. Stan Krolczyk, Dr. Zohar Argov on Gene Therapy.
- Dr. Jerry Mendell, Nationwide Children's Hospital, Columbus, Ohio, on Gene Therapy
Day 1 and Day 2 of the Symposium will take place at the De Neve Commons building. R
estrooms are available in the building with each restroom having a handicapped accessible
stall.
Dinner with Scientists will take place at Carnesale Commons. Shuttles will be available for all those who need it.
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UCLA Emergency Medical Services
Phone Number: 310-206-8886
Ambulance Station Hours: 24 hours a day, 7 days a week
Provides emergency medical care to the UCLA community.
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Nearby Places of Interest
"The Hammer museum champions the art and artists who challenge us to see the world in a new light, to experience the unexpected, to ignite our imaginations, and inspire change." ~Hammer Museum
Wednesday, August 23rd - The Billy Wilder Theater at the Hammer Museum will be playing Bring It On (2000) at 7:30 p.m. Tickets are required (free) and available at the Box Office one hour before the program. General admission tickets are available one per person on a first-come, first serve basis following member ticketing. More information can be found here.
Friday, August 25th - The Billy Wilder Theater at the Hammer Museum will be playing Freud (1962) at 7:30 p.m. from the UCLA Film and Television Archive. Advanced tickets are available online. Tickets at the door are $9. More information can be found here.
"MEMBG serves as a long-term repository for unusual plants, a refugium for biodiversity. This facility offers its educational content to the campus community, residents of Los Angeles, and visitors from around the world to enhance learning about plants and promote greater appreciation for relevance of plants to society." ~MEMBG website
"The Fowler Museum at UCLA explores global arts and cultures with an emphasis on works from Africa, Asia, the Pacific, and the Americas - past and present." ~Fowler Museum website
"One of the most distinguished outdoor installations in the country, the Franklin D. Murphy Sculpture Garden spans more than five acres of UCLA's campus with over 70 sculptures by artists such as Hans Arp, Deborah Butterfield, Alexander Calder, Barbara Hepworth, Jacques Lipchitz, Henry Moore, Auguste Rodin, and David Smith." ~Sculpture Garden website
Since 1950, UCLA continues its tradition into the 21st century as having the most impressive collegiate sports history of any university in the nation. Come see the original Heisman Trophy won by Gary Beban, the Wooden Awards won by Marques Johnson and Ed O'Bannon and the Honda-Broderick Cups won by our stellar female athletes Lisa Fernandez, Jackie Joyner-Kersee, Ann Meyers Drysdale, and Natasha Watley.
The La Brea Tar Pits are one of the world's most famous fossil localities. The newly named La Brea Tar Pits Museum displays Ice Age fossils from 10,000 to 40,000-year-old asphalt deposits. But visitors can also watch the processes of paleontology unfold. ~tarpits.org
For information on accessibility, please go here.
The Walk of Fame is an internationally recgonized Hollywood icon.
"The Sunset Strip, a stretch of Sunset Boulevard between Crescent Heights Boulevard and Doheny Drive, is one of L.A.'s most iconic neighborhoods. It was the setting for counterculture protests in the 1960s, rock and roll decadence in the '70s and '80s, and it exists today as a showcase for the good life, providing elegant hotel rooms, live music venues and fine restaurants."~DiscoverLA
Santa Monica Pier has food, fun, and shopping.
Disneyland is an amusement park. For information on accessibility, please go
here.
Universal Studios has rides, attractions, dining, shopping, and entertainment. For information on accessibility, please go
here.
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Note: While we provide information for various services and areas of interest to our attendees, we do not endorse any establishments listed here.
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