Assessment of the Use of Non-Pharmacological Methods for Managing Depression in Patients with Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD)

Background: Myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) are two types of muscular dystrophies with multi-system manifestations. Purpose: The purpose of this study was to determine 1: the prevalence of depression in patients with myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) and 2: which non-pharmacological methods DM and FSHD patients are using to manage their depression. Methods: A survey was conducted using the online system, Qualtrics. The voluntary and anonymous survey was emailed to 1,205 eligible patients from the National Registry for DM and FSHD Patients and Family Members at the University of Rochester. Participants were at least 18 years old, a member of the registry, and diagnosed with DM or FSHD. The 65 question survey included questions on basic demographic information, depression diagnosis, medication use and effectiveness, and non-pharmacological management. Surveys were collected between May 2017 and August 2017 and the responses were analyzed and compared to the general population. The study was approved by the St. John Fisher College Institutional Review Board and the Registry Scientific Advisory Committee. Results: Of the 1,205 surveys that were sent, 466 patients responded. A total of 46 percent of patients had DM (DM1 30 percent, n=138/460 and DM2 16 percent, n=75/460) and 48 percent (n=223/460) of respondents had FSHD. Of the study respondents, 34 percent (n=150/436) reported being diagnosed with depression, while 8 percent (n=24/294) feel depressed, but haven’t been diagnosed. Non-pharmacological techniques used by patients who were diagnosed with depression or feel that they are depressed included: exercise (33 percent, n=57/150), relaxation techniques once per week (51 percent, n=50/98), and visiting a counselor or therapist once per week (11 percent, n=4/37). The most common type of relaxation technique used was meditation (52 percent, n=77/147) followed by yoga (18 percent, n=24/147). In conclusion, 32 percent (n=34/107) stated that relaxation techniques helped them, and 49 percent (n=52/107) stated that relaxation techniques may have helped them. Conclusion: Patients with both DM and FSHD have been diagnosed with depression. To manage their depression, and similar to what occurs in the general population, DM and FSHD patients are using a combination of both pharmacologic and non-pharmacologic strategies. DM and FSHD patients also believe that these non-pharmacologic methods, which include exercise, counseling, and relaxation techniques are helpful in their managing depression

Children’s episodic and generic reports of alleged abuse

With the present data, we explored the relations between the language of interviewer questions, children’s reports, and case and child characteristics in forensic interviews. Results clearly indicated that the type of questions posed by interviewers – either probing generic or episodic features of an event – was related to the specificity of information reported by children. Further, interviewers appeared to adjust their questioning strategies based on the frequency of the alleged abuse. Children alleging single instances of abuse were asked more episodic questions than those alleging multiple abuses. In contrast, children alleging multiple incidents of abuse were asked a greater proportion of generic questions. Given that investigators often seek forensically-relevant episodic information, it is recommended that training for investigators focus on recognition of prompt selection tendencies and developing strategies for posing non-suggestive, episodically focused questions

Children’s Reflections on Two Cultural Ways of Working Together: “Talking with Hands and Eyes” or Requiring Words

Forty-four pairs of Mexican-heritage and European-heritage US children were asked to characterize differences between two contrasting cultural patterns of working together in video clips that showed a) Mexican Indigenous-heritage children working together by collaborating, helping, observing others, and using nonverbal as well as verbal communication, and b) middle-class European-American children working alone and using predominantly verbal communication.Through experience in two cultural settings, bilingual Mexican-heritage US children may become familiar with these contrasting cultural patterns that have been identified in research. Mexican-heritage US children characterized the clips in ways that corresponded with researchers’ descriptions more often than did European-heritage children, when discussing working together and helping but not when discussing communication.The children from the two backgrounds differed in their treatment of talk. In addition to talking more overall, half of the European-heritage US children considered talk a requirement for working together or helping, excluding nonverbal communication as a way of working together or helping. In contrast, the Mexican-heritage US children included nonverbal communication as a means of working together and helping, and some seemed to include nonverbal communication as a form of talking

The seven forms of challenges in the wildlife trade

Initiatives that aim to regulate the international wildlife trade must take into account its multiple and often complex dimensions in order to be effective. To do this, it is essential to understand the interactions between three of the key dimensions of the wildlife trade: (1) taxonomic unit, (2) geographic origin, and (3) product form and transformation. We propose a framework to provide a structured approach to defining the complexities of the wildlife trade, based on Rabinowitz’s seven forms of rarity. We demonstrate the complexities and how they apply to our framework using two contrasting examples: the trade in elephant ivory, and the horticultural orchid trade. Further we use the framework to map different traceability solutions. To be as efficient as possible, efforts to tackle the illegal and unsustainable utilisation of wildlife should take a more structured approach. This framework identifies challenges that current initiatives may face, how they may interact and provides a structure for designing future interventions

“Why archive?” and Other Important Questions Asked by Occupiers

As the Occupy Wall Street (OWS) movement began to take shape in Zuccotti Park—also known as Liberty Square—in New York City, an archives working group formed as a collective interested in preserving the physical and digital documents created by activists in the movement. Members of the Archives Working Group (AWG) were faced with a unique set of challenges, as well as the opportunity to address these challenges in an independent, non-hierarchical, non-institutional setting. Consensus-based decision-making drove the actions of the group, but competing visions also needed to be reconciled. Some of the most common questions about the role and function of archives required explanation, both within and beyond the working group. The desire and need to interact with the archives’ creators was integral to the establishment of the OWS AWG's collection. Managing relationships with any set of living donors is inherently complicated, and the occupiers we found ourselves working with represented a dynamic group of content creators and contributors. Activists ask a lot of questions. By definition activists are challenging the status quo. As members of the AWG, we were asked a lot of very valid questions including: “What is an archive? Is there a difference between art and archives?” “What are you collecting?” “Who will have access to what you are collecting?” “Where is this stuff going to be kept?” “Are you trying to collect all the archives produced in the movement?” “Why collect this?” and “Why not this?” “What do archivists do and why?” “Why should archives matter to people in the movement?” These questions and how we answered them serve as the foundation for this chapter. We will elaborate on our answers to activists’ questions and put forth an analysis of archival theory as related to some of the questions with especially complex implications. The formation of a digital archive also brought up some issues that are beyond those most relevant to the discussion of management of and access to analog archives. Part of this essay is dedicated to the ways in which we addressed these particular concerns. We will conclude with lessons learned in the process of creating a collection of physical and digital archives coming out of Occupy Wall Street in 2011-2012

Nebraska Early Childhood Workforce Survey: A Focus on Providers and Teachers

The Nebraska Early Childhood Workforce Survey was undertaken by the Buffett Early Childhood Institute at the University of Nebraska to better understand the current status, working conditions, and attitudes of caregivers and teachers working with children from birth through Grade 3. Representing the largest and most comprehensive survey ever completed of the state’s early childhood workforce, it provides important insight into the everyday challenges of the professionals who care for and educate our youngest citizens. Research has long made clear the important role adults play in young children’s lives. Children who form strong relationships with adults feel safe to explore their environments, which is essential to learning and development. The day-to-day interactions that occur between adults and young children advance children’s language, critical thinking, social-emotional development, and children’s success in school and life. Since nearly 80 percent of Nebraska children are enrolled in some type of early care and education during their early years, it is necessary to have a skilled, informed, and diverse workforce, across settings, to support children’s development

FCGR3B copy number variation is associated with systemic lupus erythematosus risk in Afro-Caribbeans.

OBJECTIVES: To evaluate FCGR3B copy number variation (CNV) in African and European populations and to determine if FCGR3B copy number is associated with SLE and SLE nephritis risk in Afro-Caribbeans, adjusting for African genetic ancestry. METHODS: We estimated FCGR3B to determine if there were ethnic variations in CNV (unrelated unadmixed Europeans and Africans). We then examined CNV at FCGR3B in relation to SLE and SLE nephritis within a case-control collection of 134 cases of SLE (37 with SLE nephritis) and 589 population controls of mainly Afro-Caribbean descent resident in Trinidad. RESULTS: We found a significant difference in copy number FCGR3B distribution between unadmixed African and European UK cohorts, with 27 (29%) vs 3 (5%) for those with low (0 or 1) copy FCGR3B, respectively, P = 0.002. In a Trinidadian SLE case-control study, low FCGR3B CNV was associated with SLE risk 1.7 (95% CI 1.1, 2.8), P = 0.02, which remained after adjustment for African genetic ancestry; odds ratios (ORs) 1.7 (95% CI 1.0, 2.8), P = 0.04. CONCLUSION: Our studies suggest that FCGR3B low copy number is associated with SLE risk in Afro-Caribbean populations independently of CNV due to African ancestry

Assessing the extent of access and benefit sharing in the wildlife trade : lessons from horticultural orchids in Southeast Asia

The equitable sharing of benefits from natural resources is a key target of the Convention on Biological Diversity. Trade in its native species is one way in which a country can potentially benefit from its natural resources, and even small-scale traders can now access global markets online. However, little is known about the extent of benefit sharing for many products, and to what extent the appropriate processes and permits are being used. We surveyed online trade in a lucrative and widely-sold product in Southeast Asia (horticultural orchids), to assess the extent of access and benefit sharing. In total, 20.8% (n=1120) of orchid species from the region were being sold. Although 7/10 countries were trading, five had very little or no trade in their native species, and the majority of recently described endemic species being traded from non-range states had no reported CITES exports from their country of origin. We suggest that addressing access and benefit sharing gaps requires wider recognition of the problem, coupled with capacity building in the countries currently benefitting least: Laos, Myanmar and Cambodia. The priority should be to increase botanical capacity and enable these countries to better control the commercialization and trade of their native species

The wild origin dilemma

The sustainable production and trade of plants, animals, and their products, including through artificial propagation and captive breeding, is an important strategy to supply the global wildlife market, particularly when the trade in wild specimens is restricted by CITES or other wildlife trade legislation. However, these production methods can become a potential mechanism for the laundering of material illegally collected from the wild, leading to recent calls for the development of traceability methods to determine the origin of traded products. Currently, identifying wild origin can be complex and may require expert knowledge and/or resource intensive molecular techniques. Here we show, using CITES Appendix I slipper orchids as a model system, that production times can be used as a threshold to identify plants in trade that have a high likelihood of being of wild origin. We suggest that this framework could be used by enforcement officers, online vendors, and others to flag material of potential concern for orchids and other high value plants in trade. Specifically, this knowledge combined with nomenclature and the list of CITES Trade Database could be used to construct a species watch list and automate online searches. The results suggest that had this been applied, questions would have been raised regarding online sales of three recently described species

Concurrent associations between mothers' references to internal states and children's social understanding in middle childhood

Although it is well established that features of maternal speech are associated with children’s social understanding in the preschool years, few studies explore this relationship in middle childhood. Within the context of a prospective longitudinal study of a representative community sample of families (subsample n = 207, mean age = 82.88 months), we investigated concurrent associations between mothers’ internal state language and aspects of 7‐year‐olds’ social understanding, including children’s understanding of belief and spontaneous references to internal states during free play. When sociodemographic, maternal, and child characteristics were controlled, mothers’ references to their own cognitions were associated with dimensions of children’s social understanding. Our findings suggest that exposure to others’ perspectives contributes to children’s advanced understanding of minds, which has implications for interventions that foster social understanding