2016 European Conference

Nonsolo15 invites you and your family to join them for a conference on dup15q syndrome near Milan, Italy.

September 9-11, 2016
Villa Sacro Cuore, Triuggio, Italy

Location

The conference will be held at Villa Sacro Cuore (Sacred Heart Villa) in Triuggio, Italy, about 20 miles north of Milan. Villa Sacro Cuore is a peaceful Catholic seminary located on beautiful grounds, with meeting and conference rooms as well as overnight accommodations and meals.

VillaSacroCuore

For more information see https://dup15q.org/family-support/new-families/register/.

fees

For a single family member, the cost of the conference is 100 € (~$114). For a family of two or more, the cost of the conference is 150 € (~$171). The conference fee includes

a two night stay at Villa Sacro Cuore
lunch and dinner on Friday
breakfast, lunch, and dinner on Saturday
breakfast and lunch on Sunday
participation in conference sessions
participation in childrens’ activities

If you’d like to extend your stay at Villa Sacro Coure before or beyond the two conference nights, lodging, with either full board, half board, or just breakfast is available.

Registration

To register for the meeting, or if you have any questions, please contact either Laura Piredda (piredda.laura@gmail.com, 0039-347-0467585) or Lorenzo Cerutti (lorenzocerutti@yahoo.it, 0039-335-7206636).

Agenda

While this is primarily a European meeting, visitors from the United States and other regions are very welcome to participate. Sessions will be presented in Italian. For all Saturday sessions, professional simultaneous translation to English will be provided.

Families are invited to involve therapists and doctors working with their children to attend the conference as well. Sessions for specialists and scientists have been planned.

The agenda for each day of the conference is shown below.

Friday, September 9th

9:00 am – 3:30 pm	Registration
2:00 pm – 3:45 pm	Scientists’ meeting professionals only, please	Lorenzo Cerutti
	Therapists’ meeting professionals only, please	Laura Piredda
4:00 pm – 4:15 pm	Opening ceremony Presentation of the Nonsolo15 group
4:15 pm – 4:30 pm	Dup15q Alliance — registry update
4:30 pm – 5:00 pm	Dup15q syndrome documentary
5:00 pm – 6:30 pm	Women’s session*	Dr. Serena Fantini and Laura Piredda
	Men’s session*	Dr. Andrea Dondi
7:30 pm	Dinner

*Groups will be further split by language. Topics will include How Dup15q syndrome changed our lives, regional and national associations and activities, and for the women, a movement laboratory experience.

Saturday, September 10th

9:00 am – 9:30 am	Promoting epilepsy research	Italian Federation for Epilepsy
9:30 am – 10:45 am	Nonsolo15 advisory board: Italian projects
	Study protocol: Validation study of the diagnosis of dup15q syndrome, objectives and experimental plan	Dr. Ettore Beghi
	Which therapy for chromosome disorders associated to mental disability?	Dr. Orsetta Zuffardi
	Epilepsy in dup15q syndrome	Dr. Giovanna Randazzo
10:45 am – 11:00 am	break
11:00 am – 11:30 pm	Dup15q and Angelman syndrome stem cells — research update	Dr. Stormy Chamberlain
11:30 am – 12:00 pm	Duplication and deficit of the UBE3A gene: different clinical aspects	Dr. Silvia Russo
12:00 pm – 12:30 pm	Dup15q Alliance studies in epilepsy: EEG and VNS	Dr. Ronald Thibert
12:30 pm – 1:00 pm	Efficacy and tolerability of VNS in dup15q syndrome	Dr. Dimitrios Arkilo
1:00 pm – 2:30 pm	lunch
2:30 pm – 3:30 pm	Family and disability	Dr. Andrea Dondi
3:30 pm – 4:45 pm	Towards autonomy	Dr. Maria Mastino
4:45 pm – 5:00 pm	break
5:00 pm – 7:00 pm	Sensory processing disorders: how to manage self-stimulatory behaviors	Dr. Mauro Mario Coppa
8:00 pm	dinner

Sunday, September 11th

9:00 am – 10:30 am	How dup15q syndrome changes the lives of relatives, friends, and volunteers	Dr. Andrea Dondi
10:30 am – 10:45 am	break
10:45 am – 1:00 pm	Nonsolo15 shareholders’ meeting
1:00 pm – 2:00 pm	lunch

ChILD care

While you are enjoying the conference, we have child care and activities arranged for your children. We are seeking volunteers to look after our special kids (with 1:1 assistance) and their siblings on Friday afternoon and all day Saturday.

The planned activities are shown below.

Friday afternoon	Our volunteers will entertain the children on site. There will be a room for quiet activities and resting inside as well as a large green play area outside the villa.
Saturday morning	Here comes the circus! The children will spend the morning entertained by jugglers and acrobats who will visit the villa from a local circus. For more information see www.spaziobizzarro.com.
Saturday afternoon	Time to move! Dance therapist Dr. Serena Fantini and our volunteers will lead the children in music and movement in a dance laboratory experience. Then, keep your eyes open for giant bubbles!