Rare – Research, Advocacy, Resilience & Empathy Unlocking Strength and Capacity in the Rare Disease Community

Nonprofit organizations vary in size and capacity. They often start with a small group of passionate people brought together with a common focus. Often their mission has a direct impact on the individual member or their communities and loved ones. Today there are over 7,000 identified rare diseases and rare disease advocacy organizations representing patients and families that singularly are small in numbers. In the aggregate, however they represent one-in-ten individuals worldwide. This paper presents a case study of one rare disease advocacy organization from the perspective of an organizational consultant who is also a parent and advocate in the rare disease community. Building upon the case study, the paper includes a review of existing research and literature and interviews with other leaders in the nonprofit and rare disease advocacy community. The capstone examines leadership and other components of nonprofit organizations, including the role of the consultant, that help bring about transformative change and innovation within this sector

Trusts and Estates

In the field of trusts and estates, the year 1967 was fairly eventful. Examination of the court decisions reveals a continuing trend toward construing documents wherever possible to conform with the presumed intent of the testator or trustor, and toward liberal construction of statutory language. At the same time, several decisions hold in favor of creditors in their relationships with the decedent\u27s estate or his survivors. From a legislative standpoint, there were several noteworthy revisions in the Probate and Civil Codes, most important of which was the adoption of a modified version of the Revised Uniform Principal and Income Act

Is Bariatric Surgery an Effective Treatment for Type II Diabetic Kidney Disease?

Type II diabetic kidney disease is devastating to patients and society alike. This review will evaluate bariatric surgery as a treatment for diabetic kidney disease primarily through its ability to induce and maintain regression of type II diabetes. The review begins by outlining the global challenge of diabetic kidney disease, its link to obesity, and the comparative benefits of bariatric surgery on weight and type II diabetes. It then surveys comprehensively the relevant literature, which reports that although bariatric surgery is associated with reductions in albuminuria, its effect on harder clinical end points like progression of diabetic kidney disease is not known. The review also includes a critical assessment of the risks and costs of bariatric surgery and concludes by acknowledging the major knowledge gaps in the field and providing research strategies to overcome them. Until these knowledge gaps are filled, clinicians will be forced to rely on their own subjective judgment in determining the benefit-risk ratio of bariatric surgery for patients with diabetic kidney disease

Comparison between the Effects of Acute Physical and Psychosocial Stress on Feedback-Based Learning

Stress modulates feedback-based learning, a process that has been implicated in declining mental function in aging and mental disorders. While acute physical and psychosocial stressors have been used interchangeably in studies on feedback-based learning, the two types of stressors involve distinct physiological and psychological processes. Whether the two types of stressors differentially influence feedback processing remains unclear. The present study compared the effects of physical and psychosocial stressors on feedback-based learning. Ninety-six subjects (Mage = 19.11 years; 50 female) completed either a cold pressor task (CPT) or mental arithmetic task (MAT), as the physical or psychosocial stressor, while electrocardiography and blood pressure were measured to assess cardiovascular stress reactivity (CVR). Self-ratings on the emotional valence of the stressors were also obtained. A probabilistic learning task was given prior to and after the stressors. Accuracy in selecting positive (Go accuracy) and avoiding negative stimuli (No-go accuracy) were recorded as learning outcomes. Repeated measures ANOVA and multiple regressions were used to compare the effects of two stressors and examine the effects of CVR and valence on the learning outcomes. The results showed that although the effects of CPT and MAT on feedback processing were not different, CVR and valence influenced Go and No-go accuracy, respectively. The results suggest that stress-modulated feedback-based learning involves multiple pathways and underscore the link between CVR and reward sensitivity. The findings have clinical implications and may contribute to a better understanding of human behavioral systems

Bayesian Reconstruction of P(r) Directly From Two-Dimensional Detector Images Via a Markov Chain Monte Carlo Method

The interatomic distance distribution, P(r), is a valuable tool for evaluating the structure of a molecule in solution and represents the maximum structural information that can be derived from solution scattering data without further assumptions. Most current instrumentation for scattering experiments (typically CCD detectors) generates a finely pixelated two-dimensional image. In contin­uation of the standard practice with earlier one-dimensional detectors, these images are typically reduced to a one-dimensional profile of scattering inten­sities, I(q), by circular averaging of the two-dimensional image. Indirect Fourier transformation methods are then used to reconstruct P(r) from I(q). Substantial advantages in data analysis, however, could be achieved by directly estimating the P(r) curve from the two-dimensional images. This article describes a Bayesian framework, using a Markov chain Monte Carlo method, for estimating the parameters of the indirect transform, and thus P(r), directly from the two-dimensional images. Using simulated detector images, it is demonstrated that this method yields P(r) curves nearly identical to the reference P(r). Furthermore, an approach for evaluating spatially correlated errors (such as those that arise from a detector point spread function) is evaluated. Accounting for these errors further improves the precision of the P(r) estimation. Experimental scattering data, where no ground truth reference P(r) is available, are used to demonstrate that this method yields a scattering and detector model that more closely reflects the two-dimensional data, as judged by smaller residuals in cross-validation, than P(r) obtained by indirect transformation of a one-dimensional profile. Finally, the method allows concurrent estimation of the beam center and D max, the longest interatomic distance in P(r), as part of the Bayesian Markov chain Monte Carlo method, reducing experimental effort and providing a well defined protocol for these parameters while also allowing estimation of the covariance among all parameters. This method provides parameter estimates of greater precision from the experimental data. The observed improvement in precision for the traditionally problematic D max is particularly noticeable

Speaking a New Language : Immigration and Civil Rights in a Global Economy

Migrations of worker’s currents across state borders confront nations with conflict relations to questions on cultural and economic status of the population at growing demands for work. In the United States of America the law on immigration- the fundamental instrument of the government for the control of borders of its country offered the answer. In defence before non-documented immigrations the government of the USA adopted a series of laws and put into force new strategies to control the effects of immigration on domestic market of labour force. But those strategies, which are to the protect the labour market, can cause disadvantageous consequences on it when not considering the civil legal rights of individuals within the same labour market. Those strategies can as well affect the individual outside labour force market in an unpredictable and negative way. The text thus analyses the interacting influences of the immigration and legal civil rights, and the consequences of that relation on the labour market, in both ways. Firstly, we are opening the question of the role of civil rights of individuals in the reformation of the immigration law (Act of 1986), which interdicted the employers to employ people to whom the state does grant the right to employ themselves. Attention is also directed on analysing the situation of victims of non-documented “transport of people” and of the law Violence Protection Act of 2000

No electromagnetic interference exists between the new remote monitoring system and implantable devices

INTRODUCTION: The BodyGuardian® is a novel remote monitoring platform comprised of a rechargeable module that attaches to an adhesive patch with attached electrodes. ECG, respiration, activity level and other clinical parameters are transmitted via Bluetooth to a smartphone and then to the central cloud platform via cellular or Wi-Fi connection for clinical review (Figure). Although approved for clinical use, potential electromagnetic interference (EMI) precludes its use among patients with implantable ...postprin