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!