Programme

The programme below applies to the general part of the SMA Conference 2018, which is open to all SMA Families as healthcare professionals and other interested parties.

In parallel, on 23 August, a specialised SMA Seminar will take place at the BOSS Centre, open exclusively to healthcare professionals. The Seminar's programme and registration form can be accessed here (in Polish only).

English translation will be offered during the Seminar (23/08) and the Main Conference (24/08) only. Workshops will not be translated, unless the speaker presents them in English.

THURSDAY INTEGRATION PROGRAMME
(optional)

THURSDAY 23 AUGUST
15:00 - 17:00

REGISTRATION
16:00 - 18:00

Art therapy

Speakers: Fabryka Kreatywności
16:00 - 18:00

Boccia (in Polish)

Speakers: Damian Iskrzycki
16:00 - 17:00

Pilates for Mums (in Polish)

Speakers: Marta Falęta
16:00 - 17:00

Speakers: Ola Schrøder Røyset
17:00 - 18:00

Turn the impossible into possible (in Polish)

Speakers: Angelika Chrapkiewicz-Gądek
18:30 - 22:00

BONFIRE AND GARDEN DINNER
19:30 - 21:00

Speakers: Iga i Konrad Grzybowscy

GENERAL PART

FRIDAY 24 AUGUST
07:00 - 09:00
08:00 - 10:00

Participants registration
10:00 - 10:30

INAUGURATION CEREMONY

Speakers: Zespół Fundacji SMA
10:30 - 11:45

How to improve patient care in SMA in Poland – stakeholders' debate led by Dr med Jakub Gierczyński

Speakers: prof. dr hab. n. med. Anna Kostera-Pruszczyk , prof. dr hab. n. med. Barbara Steinborn , dr Agnieszka Stępień , Przedstawiciel Ministerstwa Zdrowia , Przedstawiciel Narodowego Funduszu Zdrowia
11:45 - 12:15

COFFEE BREAK
12:15 - 13:15

Treating SMA with the first drug with SMA: experience and challenges – public debate led by Dr med Jakub Gierczyński

Speakers: lek. med. Karolina Aragon-Gawińska , lek. med. Sandra Modrzejewska , dr n. med. Jacek Pilch , prof. dr hab. n. med. Barbara Steinborn
13:15 - 13:30

Firefish and Sunfish – clinical trials of a new compound to treat SMA

Speakers: prof. dr hab. n. med. Barbara Steinborn
13:30 - 13:45

BIG GROUP PHOTO IN THE GARDEN
13:45 - 15:00

LUNCH AT THE OLD WATERMILL
15:00 - 16:30

PLENARY PRESENTATIONS (Sala Szafirowa/Kryształowa, parter)
What's next in SMA therapy? Progress in the development of new treatments

Speakers: Kacper Ruciński
Polish SMA Registry in clinical trial recruitment in Poland

Speakers: dr n. med. Anna Łusakowska
Treating spine deformities and administering nusinersen – new possibilities

Speakers: dr n. med. Tomasz Potaczek
Quality of life in SMA

Speakers: dr n. med. Miguel R. Gonçalves
16:30 - 17:00

COFFEE BREAK
17:00 - 18:30

SPECIALISED LECTURES
Preventing spinal degeneration in carers of disabled people (Sala Szafirowa, ground floor)

Speakers: dr Katarzyna Bulińska
Pre-implangtation genetic testing as a chance for healthy children (Sala Kryształowa, ground floor)

Speakers: dr n. med. Joanna Liss
Orthotic supplies in children with SMA (Szala Szafirowa, ground floor)

Speakers: Romano Salsi
Pregnancy in SMA (Sala Kryształowa, ground floor)

Speakers: dr hab.n. med. Ewa Romejko-Wolniewicz
Diet in SMA 2 and 3 – a case study (Sala Szafirowa, ground floor)

Speakers: Zbigniew Kasprzyk
Neurological speech and language support in daily lives of SMA patients (Sala Kryształowa, ground floor)

Speakers: Magdalena Mazur
My child as a sexual being. Workshop for parents (Sala Turkusowa, level 1)

Speakers: Alicja Paloc
How to organise an "able school" in your town (Sala Bursztynowa, ground floor)

Speakers: Podniebna Drużyna SMA
Get to the summit again and again (Sala Bursztynowa, ground floor)

Speakers: Podniebna Drużyna SMA
18:30 - 22:00

DINNER AND PARTY TILL LATE
Old Water Mill

WORKSHOPS

SATURDAY 25 AUGUST
WORKSHOPS FOR ALL
(in Polish only)
07:00 - 09:00

DELICIOUS BREAKFAST
09:00 - 10:00

EQUIPMENT PRESENTATIONS

Speakers: dr Katarzyna Bulińska
09:30 - 10:00

Relax and look after your back. Workshop for carers
10:00 - 11:15

How to fight respiratory infections using home methods

Speakers: Chiara Mastella
Me, woman. Workshop with a sex therapist

Speakers: Alicja Paloc
How to be important for one's self like for own child? Phsychology workshops

Speakers: Ewa Bigos
11:15 - 11:30

COFFEE BREAK
11:30 - 12:45

Respiratory physiotherapy

Speakers: Artur Bartochowski
Me, man. Workshop with a sex therapist

Speakers: Alicja Paloc
Relaxation techniques, coping with stress

Speakers: Ewa Bigos
12:15 - 13:30

PACKED LUNCH

MOREOVER

(Friday) Individual physiotherapy consultations (Sala Srebrna, level -1)

Speakers: dr Agnieszka Stępień
Individual physiotherapy consultations (Sala Złota, level -1)

Speakers: Chiara Mastella
(Friday) Individual consultations with a respiratory physiotherapist (Sala Kominkowa, level -1)

Speakers: Artur Bartochowski
(Friday) Individual physiotherapy consultations (Sala Alabastrowa, level 1)

Speakers: Marion Main
Individual orthopaedic consultations (Sala Lustrzana, ground floor)

Speakers: dr n. med. Tomasz Potaczek
Individual consultations with a dietician (Sala Marmurowa, level 2)

Speakers: Zbigniew Kasprzyk
Individual counselling for parents of newly diagnosed children

Speakers: Ewa Bigos
Individual consultations with a sex therapist

Speakers: Alicja Paloc
(Friday, two groups) Workshops for siblings of children with SMA (Sala Turkusowa, level 1)

Speakers: Anna Nykiel
(Saturday) Individual consultations with a neuro speech and language therapist (Sala Alabastrowa, level -1)

Speakers: Magdalena Mazur
(Saturday) Chest examination in children above 4 years (Sala Srebrna, level -1)

Speakers: dr Agnieszka Stępień
(Saturday) Workshop: Cough Assist in practice (Sala Kominkowa, level -1)

Honorary Patronage of the First Lady of the Republic of Poland, Mrs Agata Kornhauser-Duda

THURSDAY INTEGRATION PROGRAMME(optional)

GENERAL PART

WORKSHOPS

MOREOVER

THURSDAY INTEGRATION PROGRAMME
(optional)