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. You’ll have an opportunity to renew old friendships, and meet new families while learning about groundbreaking topics from speakers who are experts in their fields.

Registration: Register for the symposium on the MSUD website by May 31, 2018.

Date: June 28-30, 2018

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

Cost: The cost for the weekend conference is $25 per attendee with a maximum of $75 per family. This is a change from prior conferences in order to help defray the cost of food.

Hotel Rate and Accommodations: 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: 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. If you prefer to make your reservation online, you can do so through the MSUD website. The special room rate will be available until June 7th, 2018 or until the group block is sold out, whichever comes first.

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 with low protein food options available during these times also. Dinner will be provided on Friday 6/29 for MSUD families on the Gateway Clipper (see below).

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

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 providing assistance. 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.

Shuttle Service: Please call the hotel (412-922-8400) once you get off the plane as the shuttle service is ondemand and the hotel is 20 minutes away. Meet the shuttle through Baggage Claim at Door 8.

Gateway Clipper: Children’s Hospital of Pittsburgh of UPMC is sponsoring a social event Friday evening June 29th. Join other MSUD families on a riverboat cruise in downtown Pittsburgh. Check out the MSUD website for more information. Indicate how many from your family will be attending and the number needing low protein food on the registration form. Gateway Clipper

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. Staff will be 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 the MSUD website or contact Sarah Dworcan at This email address is being protected from spambots. You need JavaScript enabled to view it., phone # 718- 496-7185

Don’t forget to complete 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..

Check the Agenda


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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