With a great thanks to IF member and hosting organisation Spina Bifida Hydrocephalus Ireland, IF can announce that its 21st Annual Conference was extremely well-attended and a huge success. The conference lectures, the adult and youth forums and the breakout sessions were very much appreciated.
 
Mary McAleese, President of the Republic of Ireland, gave a thoughtful and inspiring opening speech, which touched and impressed all conference attendees. She emphasized the importance of actively working together to make sure that every bit of knowledge is shared and progress can be made. The full transcript of her speech can be read on the website of the President of Ireland.
 
 
 
 
 
 
At the end of the first day of the conference Jan Jařab, Regional Representative of the UN High Commissioner for Human Rights, gave a speech in which he stressed the need to protect the rights of those born with Spina Bifida and Hydrocephalus.
 
 
 
 
 
 
 
 
This year's IF Award was presented to Dr. Timothy Brei, Associate Professor of Clinical Pediatrics, Medical Director of the Spina Bifida Program at Riley Hospital Indianapolis, and Advisor to the Board of the Spina Bifida Association of America. Dr. Brei specializes in developmental paediatrics and has Spina Bifida himself. He received the IF Award for his work and research with adults and young adults with Spina Bifida and Hydrocephalus, for his committed involvement in the Spina Bifida community in the US and for being a role model for young persons with Spina Bifida and Hydrocephalus. He received the IF Award from Minister for Equality, Disability and Mental Health, Mr. John Moloney, TD, who also delivered the closing address of the conference.
 
 
 
 
 
 
`Conference photos are availabe here and here. To view the conference presentations please see below.

BENJAMIN C. WARF MD
Hydrocephalus - ETV the way forward?

The burden of Hydrocephalus in East Africa is enormous. We have estimated that in the country of Uganda, between 1500 and 2000 infants per year develop Hydrocephalus. Taking into account the reported birth rates and populations of other countries in the region, this can be extrapolated to 6500 infants per year in East Africa and more than 45000 infants per year in sub-Saharan Africa.

 

TIMOTHY BREI MD
Spina Bifida - Adolescent Activities, Beliefs, Expectations and Perceptions 

Adolescents with Spina Bifida, though hopeful and positive in their attitudes toward Spina Bifida and generally able to perform activities of daily living independently are not fully engaged in the range of adolescent activities and decision-making or achieving full success in the areas of self-management and work experiences necessary to make a successful transition to adulthood.This talk will discuss these findings in greater detail and ideas on how professionals might facilitate or support persons with Spina Bifida to support autonomy in persons with Spina Bifida.

KATHLEEN J. SAWIN, DNS, CPNP-PC, FAAN
Enhancing Independence in Adolescents with Spina Bifida

Developing the skills to manage Spina Bifida and assume adult roles begins early in childhood. However, for the adolescent and emerging adult achieving these skills becomes critical. This presentation discussed research findings describing adolescent's, young adult's and their parent's expectations about when these skills should be mastered as well as areas of similarity and differences between parent and adolescent. Discussion will focus on the risk and protective factors associated with adolescents doing well and ways for professionals and families to assist the adolescent in the achieving these important skills.

MR. M.T.SATTAR. MBBS., F.R.C.S.I., M.Phil., F.R.C.S.
Hydrocephalus - From diagnosis to surgery - What's the Next Step?

The diagnosis, treatment and management of Hydrocephalus remains a complex issue, particularly for diagnosis and prognosis of Hydrocephalus, improving current shunt treatment, predicting its success and evaluating its functionality. Mr. Sattar discussed in detail this complex issue from diagnosis, through classification and onto management. He approached this issue from a medical prospective which was balanced through his empathetic understanding of the condition formed through his vast experience working with those with Hydrocephalus and with SBHI.

ALICE RAJARATNAM Dip. COT. (MAOTI) Sr. Occupational Therapist, Manager SBHI Resource Centre, Dublin Branch
Drawing Smiles - Learning interventions for individuals with Spina Bifida

Alice presented her "Drawing Smiles" project which focuses on developing new learning strategies, improving ability and promoting ease of learning, though a journey of self-discovery where individuals discover their strengths, gain in self-confidence and consequently improve their quality of life. The project is about drawing as many smiles as possible! The project was borne from Alice's concern for children in mainstream education who struggled daily in their academic learning and performance. 

DR CAROLINE TEULIER, PH.D
Understanding motor development during the first year of life

Caroline discussed her teaching and research interests which focus on the evolution of motor coordination when humans learn a new motor skill across the life span. Caroline's research emphasis focusing on babies with myelomeningocele and babies with typical development on the development of their walking pattern.

 

 

DR TRUDI EDGINTON
Cognitive and behavioural implications associated with Hydrocephalus and Spina Bifida

This focused on the implications of these cognitive and behavioural difficulties associated with Hydrocephalus and Spina Bifida and will review the specific role of self-awareness and insight. This research has investigated the role of self-perception and carer perceptions of cognitive abilities and has revealed specific areas of disparity and concordance between subjective self-perception, carer perception and actual cognitive performance (Edginton et al, 2010). 

 

TIMOTHY BREI, MD & KATHLEEN J. SAWIN, DNS, CPNP-PC, FAAN
The Experience of Parenting an individual with Spina Bifida

Parenting a child with a disability can be stressful and, in the case of Spina Bifida, is complicated by both the presence of physical challenges and the possibility of learning disabilities. In this session we will present research related to parenting in Spina Bifida, and we will have open discussion and dialogue about parenting individuals with Spina Bifida and ways for parents to facilitate promoting positive outcomes for their children with Spina Bifida.

Spina Bifida - Self Concept, Family and Peer Relationships

Although the overall self-concept for many youth with Spina Bifida is positive, youth face many challenges living with Spina Bifida such as developing peer relationships, school-based issues, and bullying and teasing. Findings from studies of adolescents will be presented including the protective impact of close relationships with parents. Discussion will address strategies to enhance self-concept and peer relationships.

FRANCES HALLIGAN & BERNADETTE KERRY
Skin Care, Bowel & Bladder Interventions - What's the Next Step?

Frances presented and discussed Spina Bifida as a multifaceted condition with a particular focus on bowel & bladder interventions. She offered support and guidance on the condition, what the future holds for the person with Spina Bifida and what treatments and management interventions are available. She also discussed how to meet the needs of the person with Spina Bifida in relation to their continence choices and the social stigma that can be associated with incontinence. Bernadette discussed the relationship between Spina Bifida, Continence and Skincare and how this relationship can be managed. She offered delegates an in-depth understanding of this relationship by looking at how the person with Spina Bifida can best manage their skincare, what strategies to use and how best to accommodate their personal needs, while balancing the importance of a regular skincare routine.

 

 

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