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19th BIENNIAL MSUD SYMPOSIUM
Thursday, June 28, 2018, 07:00pm
To Saturday, June 30, 2018
I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference, because I’ve built in extra time for social interaction. In addition to renewing old friendships and meeting new families, you can expect interesting speakers and topics.

1. Registration

All attendees must register, including children, so that we have an accurate count for food and space. Due by May 31, 2018.

Register

2. Hotel Reservation

Make a hotel reservation at DoubleTree Green Tree. State that you are attending the Symposium to receive the discounted rate.

Make Reservation

3. Patient Registry

Gather information to complete the NBS MSUD Connect patient registry at the symposium if you have not done so already.

Complete the Registry

Registration: Please complete the online registration form so that I will have an accurate count of attendees.

You can also print the registration form and mail it back to me by May 31, 2018:

Sandy Bulcher
9517 Big Bear Ave
Powell, Ohio 43065

Location: DoubleTree by Hilton Hotel Pittsburgh – Green Tree (the hotel is located 20 minutes from Pittsburgh International Airport (PIT) and 3 miles from downtown Pittsburgh).

500 Mansfield Avenue, Pittsburgh, PA 15205
Phone 412-922-8400
Fax 412-922-8981
Website: Visit DoubleTree's website

Cost: There is a $25 fee per person and $75 max fee per family for the entire weekend to defray the cost of food. Please pay in advance of the symposium if possible. Make check payable to “MSUD Family Support Group” and mail it to Dave Bulcher, MSUD Treasurer, 9517 Big Bear Ave, Powell, Ohio 43065.

Meals: Complimentary drinks and light meal will be provided for all attendees on Thursday evening 6-28. Breakfast Buffet is included in the cost of the room rate for all those staying at the DoubleTree by Hilton Hotel on Friday 6/29 and Saturday 6/30. Those not staying at the DoubleTree will need to provide their own breakfast on those mornings. Lunch on Friday 6/29 and Saturday 6/30 will be provided to all attendees. Low protein food options will be available during these times also. Dinner will be provided on Friday 6/29 for MSUD families on the Gateway Clipper.

Attire: Comfortable, casual attire is appropriate for the entire symposium

Child Care Activity Room: There will be a room available with activities/entertainment for children and there will be several volunteers to assist the children. However, there will be no babysitting services. Please keep this in mind as you plan your trip. Consider bringing a grandparent, teenager, or sibling to babysit your younger children. Older children, teens, and young adults are encouraged to attend the general sessions.

Hotel Information

Hotel Rate and Accommodations: You can make your hotel reservation now online or call the hotel at 412-922-8400 and mention MSUD when you make your reservation. Room rate is $109 per night which includes breakfast for up to 4 people. ($12 per person for additional guests) Rooms have 1 king bed or 2 queen beds. Handicap rooms are available. The hotel has 3 restaurants. Other amenities include an indoor pool, outdoor pool, refrigerator in each room, fitness center, business center, and free parking. There is also complimentary shuttle service to and from the airport.

Hotel reservations: You can make your reservation now! This special room rate will be available until June 7th, 2018 or until the group block is sold out, whichever comes first. Reservations can be made by calling the hotel directly at 412-922-8400. State that you are attending the MSUD Family Support Group Symposium to receive the discounted rate.

Hotel check-in is 3:00PM and check- out is 12:00PM.

Directions to the hotel:
From Philadelphia, Harrisburg and East, PA Turnpike West to Pittsburgh Exit 57 (Pittsburgh exit at Monroeville.) Follow 376 West toward Pittsburgh. Proceed through the Squirrel Hill Tunnel. As you are passing downtown Pittsburgh you will see signs for Fort Pitt Bridge. Cross the bridge and head through the Fort Pitt Tunnel. As you exit the tunnel you will continue on 376 West towards the airport. Go 2 miles and take Exit 67 Green Tree/Crafton. The ramp will split, bear left on the exit. At the stop sign make a left onto Mansfield Avenue. Go straight through two lights and The Doubletree Hotel will be the next drive on the right.

From Erie, Buffalo and North, Take 79 South towards Pittsburgh. Do not use exit 21 Pittsburgh! Continue on 79S to the Pittsburgh exit #59A. Merge onto 376 East towards Pittsburgh. Exit 376 East at Exit 67 Green Tree/Mt. Lebanon. Stay in the far-left lane. At traffic light make left turn onto Green Tree Road (Rt 121). At the very next traffic light make a left turn onto Mansfield. Go straight through two lights and The Doubletree Hotel will be the next drive on the right.

From West Virginia I-17 East, Enter on I-79 North. Follow 79 North to Pittsburgh. Approximately 20 miles. Get on 376 East towards Pittsburgh. Exit 376 East at Exit 67 Green Tree/Mt. Lebanon. Stay in far left lane. At traffic light make left turn onto Green Tree Road (Rt 121). At the very next traffic light make a left turn onto Mansfield. Go straight through two lights and The Doubletree Hotel will be the next drive on the right.

From Ohio and West, Take the PA Turnpike (76 East) to 79 South. Do not use exit 21 Pittsburgh! Continue on 79S to the Pittsburgh exit #59A. Merge onto 376 East towards Pittsburgh. Exit 376 East at Exit 67 Green Tree/Mt. Lebanon. Stay in the far-left lane. At traffic light make left turn onto Green Tree Road (Rt 121). At the very next traffic light make a left turn onto Mansfield. Go through two traffic lights. Go straight through two lights and The Doubletree Hotel will be the next drive on the right.

Agenda

Thursday June 28th
7:00 - 9:00 PM Registration/Reception - Salon C, D, E (light meal and drinks provided)
Friday June 29th
6:30 - 8:00 AM Breakfast Buffet - Salon A (hotel guests only)
8:00 - 8:15 AM General Session - Salon C, D, E
Sandy Bulcher MSUD Symposium Coordinator - Welcome
8:15 - 9:15 AM Nicholas Ah Mew MD, Children’s National Health System
Medical Management of MSUD
9:15 - 9:45 AM Rani Singh PhD, RD, Emory University
Aileen Kenneson-Adams PhD, Emory University
NBS MSUD Connect Patient Registry Provides Insights into Natural History
9:45 - 10:15 AM Break
10:15 - 10:45 AM James Wilson MD, PhD UPenn Orphan Disease Center
Genetic Therapies for MSUD
10:45 - 11:00 AM Introduction of families attending the symposium for the first time
11:00 - 11:30 AM Brian Wamhoff PhD, HemoShear Therapeutics
Using Patient-Derived Cells to Discover New Treatments for MSUD
11:30 AM - 12:00 PM doyourshare.com video
Group photo of MSUD children and adults, location to be announced
12:00 - 1:00 PM Lunch - Salon A (all attendees)
1:00 - 4:00 PM General Session - Salon C, D, E
Liver Transplant breakout - Salon B
( See the Liver Transplant agenda)
1:00 - 1:45 PM Stephen Strom PhD, Karolinska Institute
Gene Editing and Cell Transplantation for the Treatment of Liver Disease
1:45 - 2:30 PM Arvind Ramanathan PhD, Buck Institute
Uncovering the Metabolic and Nutrient Sensing Dysfunction in MSUD
2:30 - 3:00 PM Break
3:00 - 3:15 PM MSUD Board update
3:15 - 4:00 PM Rani Singh PhD, RD, Emory University
Nutrition Management of MSUD
5:30 PM Board buses to the Gateway Clipper social event (wheelchair accessible buses board at 5:15pm)
6:00 - 9:00 PM Social gathering sponsored by Children’s Hospital of Pittsburgh of UPMC - Gateway Clipper downtown Pittsburgh (dinner included)
Saturday June 30th
6:30 - 8:30 AM Breakfast Buffet - Salon A (hotel guests only)
8:30 - 9:00 AM General Session - Salon C, D, E
Robert Steiner MD, Acer Therapeutics
Clinical Research and Drug Development - The Pathway to Drug Approval
9:00 - 9:45 AM MSUD Teen/Adult Panel
9:45 - 10:15 AM Break
10:15 - 11:00 AM Kendra Bjoraker PhD, LP, 3:1 Neuropsychology Consultants
Living with a Chronic Condition
11:00 - 11:45 AM Professional Panel with Dr Ah Mew, Dr Singh, Dr Bjoraker
Question and Answer
11:45 AM - 1:15 PM Lunch - Salon A (all attendees)
1:15 - 1:35 PM Ed Fischler and Herb Foster
Fundraising
1:35 - 2:00 PM Karen Dolins and Chad Farquharson
Advocacy
2:00 - 3:00 PM Chef Neil ,Vitaflo International
Low Pro Cooking Tips and Demo
Dismiss Video of past symposiums


Shuttle Service: Please call the hotel (412-922-8400) once you get off the plane as the shuttle service is on-demand and the hotel is 15 minutes away. Meet the shuttle through Baggage Claim at Door 8.

Gateway Clipper: Review the information about the Gateway Clipper event. The event is sponsored by Children’s Hospital of Pittsburgh of UPMC and open to all MSUD families, including those that have had a transplant. It will be held on Fri evening June 29th. Indicate how many from your family will be attending and the number needing low protein diet on the registration form.

NBS MSUD Connect patient registry: If you have not completed a profile on the NBS MSUD Connect patient registry, you will be able to do so at the symposium. There will be staff available to assist you. If possible, please bring information including the affected MSUD individual’s leucine level at diagnosis, recent leucine levels, genetic mutation and/or enzyme testing, and a current list of medications and supplements with you to the symposium. You may need to contact your metabolic team to obtain some of the information. Those that have been transplanted are encouraged to participate in the registry also.

Travel Assistance: Again we received a generous donation from the United Service Foundation to assist with travel expenses. If you would like to attend the symposium and need financial assistance, you may apply through this form or contact Sarah Dworcan at This email address is being protected from spambots. You need JavaScript enabled to view it., phone # 718-406-7185.

Don’t forget to return your registration form and make your hotel reservation!

If you have any questions, feel free to call me at 740-972-5619 or email at This email address is being protected from spambots. You need JavaScript enabled to view it..

See you in Pittsburgh!

Sandy Bulcher, VP, MSUD Family Support Group and Symposium Coordinator

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