International Families Update International Conference STRONGER TOGETHER Orlando, Florida USA July 30 th -August 1 st

Transcription

1 International Families Update 2015 International Conference STRONGER TOGETHER Orlando, Florida USA July 30 th -August 1 st

2 Agenda Role of the Alliance Australia Update Italy Video Spain Video France Report Q&A from around the world Projects

3 Questions for the 2014 Board Meeting Help families get organized or provide support through Dup15q? Promote research or family support? (survey says family support more important creation of a family clinic in Europe?) Regional gatherings in Europe, Australia? South America? China? Scientific or family oriented? Australia group formation

4 Dup15q Australia Background At present, there is no formal association in Australia Parents communicate via a Facebook site to share ideas and experiences The approach to care, fundraising and community awareness is on a wholly individual basis with at present no capacity for a group focus In February 2015 a conference call was held between Fernando Gomez on behalf of the Dup15q Alliance and 6 parents in Australia All in attendance were of the view that investigations should be made into the feasibility of an entity in Australia

5 Dup15q Australia An abstract of ideas was put together to underpin what the goals of the association would be: Awareness Advocacy Support Research Clinics & Clinical Database Accomodation/Respite Facilitation of a domestic conference Online access to the US conference

6 Dup15q Australia Current Status Connections have been made with similar associations and support groups in Australia, principally PraderWilli, Angelman, Fragile X Connections have been made with potential benefactors to provide startup/support funding Rotary, Dup15 Alliance, private philanthropy Connections have been made with clinicians and researchers Royal Children s Hospital, Murdoch Children s Research Institute (MCRI), Genetic Alliance Australia Attendance at a Newborn Bloodspot Screening workshop in Melbourne at the invitation of MCRI to discuss the potential of Dup15q being included in future NBS testing

7 Dup15q Australia Next Steps Communication with all Australian families registered with the Alliance Formation of a volunteer committee Formal registration of a Not for Profit entity in one Australian state which is a pre-requisite for Federal registration of a Not for Profit entity Building of an Australian website

8 Dup15q Australia Challenges Time we all know the daily challenges every family faces Knowledge of our existing network -ienumbers registered on the FB page as against actual numbers in the country Privacy laws Australian laws restrict contact without express permission Tyranny of Distance A country 77% the size of the US with 7% of the population of the US makes it difficult to meet face to face Legislative process state based fundraising is straightforward, national fundraising is difficult

9 Dup15q Australia Opportunities Australia has one of the highest rates of volunteering per capita in the world Philanthropic environment -Australians are very generous which will present great opportunities for fundraising Funding model with awareness comes increased opportunities for access to government subsidies and services Clinical environment One of the leading health systems in the world in terms of access and capability

10 Italy Video Laura Piredda presenting!

11 Spain Video

12 Spain Update: New Book Spanish Version available in Store! English Version is coming up shortly True story of a family raising a Dup15q child

13 Q&A: Alison Kalnicki From Canada 1. Could Dup15q Alliance brand itself in a more international way? ie. include the word International in its name, use multi-lingual words in logos, use a globe image in its logo 2. Could Dupq5q Alliance include its members in the decision making process in a consultative way more? 3. Will there be clinics based outside of the United States?

14 Q&A: Maria Do Carmo Dantas from Brazil Hello, My name is Maria do CarmoDantasMartins and my daughter is Adriana Martins de Araujo. I wrote earlier to you and now I have another question, which was made by her psychologist. Along her development was observed that addition of the syndrome, there was anxiety suggesting the existence of a behavioral disorder, where the increase in seizure be justified by this functional neuro disorder. I wonder know if this is a characteristic of people with this syndrome? I appreciate your attention to the families of other countries that have no possibility to closely watch the news. Thanks

15 France Report: Stefanie Lebailly We have invested more and more time in communication with our non-verbal son Daniel, aged 26 years: In a first time I ve made pictoshanging all over in our house: What steps to wash my hands (in bathroom), place of my helmet, place of toilets. to mention the most important ones. It costed me a lot of time, but it was worth while! Then we have bought a tablettein order to enregisterthe voice of my husband saying «yes» and «no».and we ve have trained to point out with the finger. At last we ve began to use some simple gestures when we are speaking to Daniel.

16 Stefanie Lebailly Our experiences with pictogrammes(teacch): My son does not really look at the pictures hanging around, but he has seen them, nevertheless: The pictogrammeshelp him to remember certain things to do (f.exget closed a door or stop running water in the bathroom), and to get orientation in his home (place of things which are important for him f. ex. toilets, helmet). And he learns, how to wash his hands. Daniel does not like training (giving the picture, having object in return). But the pictures can help in the natural communication of everydayslife: To make him really understand what to do step by step, the place where to go to etc.

17 Stefanie Lebailly Our experience with the tablette: We didn t really found an application in French adapted to the facultatiesof communication of our son. So we «made ourselves»: We took the pictogrammessaying «yes» and «no» -( which seemed to be of very little interest to our son) and gave them a voice the voice of my husband. And immediately Daniel was motivated and very proud of him!!! This was THE IDEA of the year! Daniel has rapidly learned to say yes he still must learn to say no. And when he doesn t take attention and he says no instead of yes (ex. do you want to eat some pancakes?) he rapidly returns to his tablette to say yes!

18 Stefanie Lebailly We are training now precision in pointing out in ordertto make him make choices, too. And last, not least, we use some simple gestures by talking to him.we can accelerate his reaction which can be long sometimes! With this from France, I would like to encourage all parents of non-verbal kids, to try all possible methods available in order to communicate with their child!it is so much worth while! It can give you so much! You mustn t desperate if one method doesn t function as you want, continue to find other methods and apply them all to the extend of your child s abilities! Go ahead!

19 Thank You! Merci! Grazie! Obrigado! Fernando Gomez

20 More Videos (requires Internet) Italia Espana