2 November 2016 // More research in prevention and improvements in care needed to achieve the next turning point by the global community of Spina Bifida and Hydrocephalus.
During the past three days Ghent hosted almost 300 participants of the Turning Points Conference. It was already the 27th International Conference on Spina Bifida and Hydrocephalus. The debates were very innovative, frank and sometimes emotional. One of the highlights of this weekend was the official launch by HRH Princess Astrid of Belgium of the first Global Prevention Initiative.
Several important meetings took place: IF Youth Group, IF Global Experts Panel, Working Group International Solidarity, IF EU workshop, and the workshop for SBH clinicians on multidisciplinary care, foetal surgery and European Reference networks.
2016 IF PRIZE GOES TO…
Each year the IF Award is presented to an individual or organisation in recognition of their special contribution to the service of people with disabilities in general or to people with Spina Bifida and Hydrocephalus in particular. This year, HRH Princess Astrid of Belgium together with IF’s President Margo Whiteford awarded Catalina Devandas and Myleen Christiaens with the annual IF’s Award.
Myleen Christiaens is a coordinator nurse for children and adults with Spina Bifida at the University Hospital Leuven in Belgium, where she is involved in urodynamic evaluations for paediatric disciplines. For many years she has been volunteering for IF and Child-Help as continence nurse for healthcare education in Africa, as well as contributing to IF conferences and workshops with her expert knowledge.
Catalina Devandas Aguilar is a lawyer by training and human rights advocate born with SB, who has worked extensively on disability issues at the national, regional and international level. She is the UN Special Rapporteur on the rights of persons with disabilities.
UPDATES FROM THE BOARD AND GENERAL ASSEMBLY
The IF Board has adopted the Statement on Multidisciplinary Care to be used by its members as an advocacy tool.
Margo Whiteford has been re-elected as IF President and four new Board members have been elected to join the IF Board for the mandate of 3 years: Tom Scott (Ireland), Aziza Mustafa Elnaeema (Sudan), Papatya Alkan Genca (Turkey), and Nicola Busata (Italy). Congratulations for the newly elected members and thank you to the leaving members: Thelma Cloake, Nurdan Emine Anli, Santosh Karmarkar, and Lumbwe Chiwele.
IF General Assembly decided to enlarge IF's membership, accepting five new SBH communities from:
- Algeria: Association des Parents et Malades Spina Bifida Bejaia
- Belgium: Association Spina Bifida Belge Francophone (ASBBF)
- Japan: Japan Council for Spina Bifida and Hydrocephalus
- Malaysia: Spina Bifida Association Malaysia (SIBIAM)
- Morocco: Association de Spina – Bifida et Handicaps Associés (SBIHAM)
The 28th International Conference on Spina Bifida and Hydrocephalus will take place on 3-4 October 2017 at the University of Texas, Austin, USA.
Here you can access some of the presentations and book of abstracts:
- Godfrey Oakley: Preventing Folic Acid Preventable Spina Bifida and Anencephaly— 25 Years On
- Aiguo REN: Neural Tube Defects, Risk Factors, and Folic Acid
- Anne M. Molloy: Vitamin B12, Folic Acid Metabolism and Neural Tube Defects
- Richard H. Finnell: Maternal Autoimmunity and Spina Bifida:Efforts to Identify Serum Biomarkers of Risk
- Martine Austin: What is IF Global Prevention Initiative?
- Juan Pablo Peña-Rosas: The World Health Organization response to the 2010 birth defects resolution
- Filip Van Bockstaele: Going Forward with Flour Fortification in Africa
- Denhard de Smit: Dutch public health campaign on folic acid: lessons for the future
- Lieven Bauwens: PUSH! Global Alliance
- Daniel De Wilde: Staying active throughout the life course
- Dominika Madaj- Solberg: My turning point …
- Femke Bannink Mbazzi: Experiences of belonging of children with spina bifida in Uganda
- Amy McPherson: Discussing sexuality in the context of spina bifida in relationships
- Mario Sel, An Meeussen, Kristel Van Calsteren: Parenthood and SBH, Parenthood
- Martijn Klem, David Morrissey: Ageing with a chronic disability
- Geert Van Hove: Inclusive Education: What can we learn from different perspectives?
- Glenn Conings, Sebastian Dürr: Independent Living (ENIL)
- Janina Arsenjeva: EU workshop
- A. Carta: European Reference Networks
- Manunta A, Jezequel M, Journel H, Menard H: ERN networks- finding the right place for SBH – way forward, The Spina Bifida network in France
- Ampar Cuxart: Multidisciplinary Clinic for lifelong care of Spina Bifida patients
- Elena Carreras: Open Spina Bifida- evolution in techniques
- Frantisek Horn: Organization of a multidisciplinary clinic in Slovakia
- Helene Verhelst: Organization of a multidisciplinary clinic in Belgium
- Jan Deprest: In utero closureof spina bifida: Leuven & London
- Kamath Tallur: ERN cooperation in the UK
- L. Mazzone: Maternal foetal surgery - The Zurich Experience
- Vanhecke Nele: Spina’s in het onderwijs, Conferentie
- Martine Dewaele (mama van Joris): Beleving van een mama
- Introducing Joris (movie with EN subtitles)
- Helene Verhelst, Annick Viaene: Transitie in het Spina Bifida Referentiecentrum UZ Gent