LINK
LINK
Children with Marfan (MFS) and Loeys-Dietz syndrome (LDS) report limitations in physical activities, sports, school, leisure, and work participation in daily life. This observational, cross-sectional, multicenter study explores associations between physical fitness and cardiovascular parameters, systemic manifestations, fatigue, and pain in children with MFS and LDS. Forty-two participants, aged 6–18 years (mean (SD) 11.5(3.7)), diagnosed with MFS (n = 36) or LDS (n = 6), were enrolled. Physical fitness was evaluated using the Fitkids Treadmill Test’s time to exhaustion (TTE) outcome measure. Cardiovascular parameters (e.g., echocardiographic parameters, aortic surgery, cardiovascular medication) and systemic manifestations (systemic score of the revised Ghent criteria) were collected. Pain was obtained by visual analog scale. Fatigue was evaluated by PROMIS® Fatigue-10a-Pediatric-v2.0-short-form and PROMIS® Fatigue-10a-Parent-Proxy-v2.0-short-form. Multivariate linear regression analyses explored associations between physical fitness (dependent variable) and independent variables that emerged from the univariate linear regression analyses (criterion p <.05). The total group (MFS and LDS) and the MFS subgroup scored below norms on physical fitness TTE Z-score (mean (SD) −3.1 (2.9); −3.0 (3.0), respectively). Univariate analyses showed associations between TTE Z-score aortic surgery, fatigue, and pain (criterion p <.05). Multivariate analyses showed an association between physical fitness and pediatric self-reported fatigue that explained 48%; 49%, respectively, of TTE Z-score variance (F (1,18) = 18.6, p ≤.001, r2 =.48; F (1,15) = 16,3, p =.01, r2 =.49, respectively). Conclusions: Physical fitness is low in children with MFS or LDS and associated with self-reported fatigue. Our findings emphasize the potential of standardized and tailored exercise programs to improve physical fitness and reduce fatigue, ultimately enhancing the physical activity and sports, school, leisure, and work participation of children with MFS and LDS. (Table presented.)
My research investigates the concept of permacomputing, a blend of the words permaculture and computing, as a potential field of convergence of technology, arts, environmental research and activism, and as a subject of future school curricula in art and design. This concept originated in online subcultures, and is currently restricted to creative coding communities. I study in what way permacomputing principles may be used to redefine how art and design education is taught. More generally, I want to research the potential of permacomputing as a critical, sustainable, and practical alternative to the way digital technology is being taught in art education, where students mostly rely on tools and techniques geared towards maximising productivity and mass consumption. This situation is at odds with goals for sustainable production and consumption. I want to research to what degree the concept of permacomputing can be broadened and applied to critically revised, sustainable ways of making computing part of art and design education and professional practice. This research will be embedded in the design curriculum of Willem de Kooning Academy, focused on redefining the role of artists and designers to contribute to future modes of sustainable organisation and production. It is aligned with Rotterdam University of Applied Sciences sectorplan masters VH, in particular managing and directing sustainable transitions. This research builds upon twenty years of experience in the creative industries. It is an attempt to generalise, consolidate, and structure methods and practices for sustainable art and design production experimented with while I was course director of a master programme at WdKA. Throughout the research I will be exchanging with peers and confirmed interested parties, a.o.: Het Nieuwe Instituut (NL), RUAS Creating 010 kenniscentrum (NL), Bergen Centre for Electronic Arts (NO), Mikrolabs (NO), Varia (NL), Media Arts department at RHU (UK), Media Studies at UvA (NL).
Ready, Set, Go for Health (ReSetGo) The UN declared health as a fundamental right for all. Due to the exponential rise of healthcare costs and the greying of the European population, the current healthcare system is unsustainable. This has major negative individual and population consequences making health a priority on the EU-agenda. To change this for the better, a sustainable transition from the current healthcare system, primarily focusing on cure and care, towards health as a capability is needed. Health is influenced by many determinants and involves an interaction of psychological, environmental (social/physical) and political factors. This systemic view means that health is not only an individual responsibility. Rather, we need to create communities that strengthen the ability to optimize health. What becomes clear from the reflections of the (health)professionals in the context of Eemsdelta, is that a transition towards health is needed and that support and a critical amount of capacity is a prerequisite. But is a community ready and is there enough capacity to start the health transition towards healthy living? In order to be able to map this health transition readiness and capacity at each stage of the transition process a monitor needs to developed. Based on interaction with the practical field and our experiences, Hanze (NL) feels the need to further facilitate this health transition and developed ReSetGo together with consortium partners IPB (PT), Metropolia (FI) and Thrive (NL). ReSetGo has two goals: 1) develop and test a health transition readiness and capacity monitor in existing communities in FI, PT and NL; 2) extend our international network and prepare a Marie Skłodowska-Curie/Doctoral Network proposal on this health transition theme.
Zowel bij ondernemers als onder kunstenaars zien we steeds meer initiatieven gericht op de ontwikkeling van een ‘volhoudbare’ economie. Partijen uit deze domeinen zoeken manieren om een generatieve economie te bewerkstelligen die – anders dan een extractieve economie (‘de economie van het leegtrekken’) – sociaal rechtvaardig en ecologisch duurzaam wil zijn. Omdat kunstenaars en ondernemers in hun zoektocht naar innovaties-met-impact verschillende kwaliteiten inbrengen, wordt veel verwacht van samenwerking tussen de twee sectoren. In de praktijk echter is synergie eerder regel dan uitzondering. De grote verschillen tussen de twee ‘innovatiesferen’ leiden vooralsnog tot meer gedoe dan complementariteit. In het vraagarticulatietraject dat ten grondslag ligt aan SUSTAIN kwam naar voren dat hier een belangrijke rol is weggelegd voor zogeheten innovatiebrokers: derde partijen die werelden van ondernemerschap en kunst op duurzame wijze met elkaar weten te verbinden. In SUSTAIN willen we de body of knowledge en het handelingsinstrumentarium van deze innovatiebrokers verrijken. Door met praktijkgericht onderzoek juist in deze beroepsgroep te investeren, hopen we een hefboomeffect richting de volhoudbare economie te creëren: we dragen bij aan de effectiviteit van de samenwerking tussen de innovatiesferen kunst en ondernemerschap. Onze hoofdvraag luidt: Wat kunnen innovatiebrokers op het snijvlak van kunst en ondernemen in de verschillende fases van het innovatietraject leren en doen om de synergie van de samenwerking tussen ondernemers en kunstenaars te vergroten en zo een duurzame bijdrage te leveren aan de transitie richting een volhoudbare economie? Gedurende het onderzoek ontwikkelen we een gefundeerd Brokers Kenniscanvas dat beschrijft welke vraagstukken zich aandienen in samenwerkingsverbanden tussen kunstenaars en ondernemers en hoe de innovatiebrokers die vraagstukken hanteerbaar en productief kunnen maken. We richten ons welbewust op het ‘gedoe’ in de samenwerking en ontwikkelen vóór en mét de innovatiebrokers kennis over hoe vandaaruit synergie te realiseren.
