Resourcing Adolescent Girls to Thrive: A report exploring where is the money for adolescent girls rights using an ecosystem approach

Working within feminist, women's rights movements and adolescent girls' and young feminist activism, it was evident to the research team that the funding landscape for adolescent girls is not well understood or developed. Searching for the money that flows to adolescent girls often feels like wandering a valley floor within the mountains, crossing a stream every now and then, and seeing only the features of the landscape within the immediate view. The larger picture and its interconnectedness is obscured, shrouded by the lack of clear and consistent data and tracking, like an incomplete map. Despite adolescent girls being a unique population, there is a disconnect between girls' expressed needs, and the resources flowing for their work and activism. This was corroborated by funders who resource adolescent girls from a feminist perspective and see girls as agents of change – and so this research was commissioned. It seeks to offer sensemaking of the adolescent girls' funding landscape to stimulate a conversation and reflection about how to resource adolescent girls to thrive. It does so using a feminist approach to funding adolescent girls as the way to bring about long-lasting transformation in their lives as the point of departure.Methodologies included three workshops with 31 girls (10 countries), a survey and two workshops with 13 feminist girls' funders, complemented by a literature review (49 resources), public data review of 71 actors, six data collecting entities, and 21 key informant interviews. All of the findings from these methods were then further sensemade through virtual workshops and desk reviews with nine Working Group members

Resourcing Girls to Thrive: Key Findings and Recommendations Guide

The Resourcing Girls to Thrive guide offers a synthesized version of the Resourcing Girls to Thrive research report, highlighting the key findings and recommendations of the research process aimed to fill gaps in the understanding of the girls' funding landscape in terms of identifying the funders, the amounts and ways of funding distributions, and to what extent adolescent girls themselves are present across the funding landscape intended for them.

Resourcing Girls to Thrive: Research exploring funding for adolescent girls' rights 2023

The Resourcing Girls' to Thrive research provides critical insights for funders, policy-makers and practitioners who want to support and deliver transformational programs for adolescent girls.Working within feminist, women's rights movements and adolescent girls' and young feminist activism, it was evident to the research team that the funding landscape for adolescent girls is not well understood or developed. Searching for the money that flows to adolescent girls often feels like wandering a valley floor within the mountains, crossing a stream every now and then, and seeing only the features of the landscape within the immediate view. The larger picture and its interconnectedness is obscured, shrouded by the lack of clear and consistent data and tracking, like an incomplete map. Despite adolescent girls being a unique population, there is a disconnect between girls' expressed needs, and the resources flowing for their work and activism. This was corroborated by funders who resource adolescent girls from a feminist perspective and see girls as political actors — and so this research was commissioned. It seeks to offer sensemaking of the adolescent girls' funding landscape to stimulate a conversation and reflection about how to resource adolescent girls to thrive. It does so using a feminist approach to funding adolescent girls as the way to bring about long-lasting transformation in their lives as the point of departure.Methodologies included four workshops with 31 girls (8 countries), a survey and two workshops with 13 feminist girls' funders, complemented by a literature review (49 resources), public data review of 71 actors, six data collecting entities, and 21 key informant interviews. All of the findings from these methods were then further sensemade through virtual workshops and desk reviews with nine Working Group members. More details on the methodologies can be found in annex 4

Gender-Based Violence Is a Human Rights Violation: Are Donors Responding Adequately? What a Decade of Donor Interventions in Colombia, Kenya, and Uganda Reveals

Gender-based violence (GBV) is a violation of human rights and must be addressed as such. This paper examines whether donor practices align with a rights-based approach, using data from our comprehensive study of foreign funding flows related to GBV in Colombia, Kenya, and Uganda from 2010 to 2020. By analyzing data from 1,180 grants—and providing parallel analyses of the state of GBV, and GBV reporting and interventions in each country—we demonstrate donors’ role in shaping GBV outcomes and their consequent duty to address policies and practices that violate rights. Accordingly, we propose changes in donor practices to promote realization of the right to freedom from violence

Genome-wide Analyses Identify KIF5A as a Novel ALS Gene

To identify novel genes associated with ALS, we undertook two lines of investigation. We carried out a genome-wide association study comparing 20,806 ALS cases and 59,804 controls. Independently, we performed a rare variant burden analysis comparing 1,138 index familial ALS cases and 19,494 controls. Through both approaches, we identified kinesin family member 5A (KIF5A) as a novel gene associated with ALS. Interestingly, mutations predominantly in the N-terminal motor domain of KIF5A are causative for two neurodegenerative diseases: hereditary spastic paraplegia (SPG10) and Charcot-Marie-Tooth type 2 (CMT2). In contrast, ALS-associated mutations are primarily located at the C-terminal cargo-binding tail domain and patients harboring loss-of-function mutations displayed an extended survival relative to typical ALS cases. Taken together, these results broaden the phenotype spectrum resulting from mutations in KIF5A and strengthen the role of cytoskeletal defects in the pathogenesis of ALS.Peer reviewe

Association of Variants in the SPTLC1 Gene With Juvenile Amyotrophic Lateral Sclerosis

Importance: Juvenile amyotrophic lateral sclerosis (ALS) is a rare form of ALS characterized by age of symptom onset less than 25 years and a variable presentation.Objective: To identify the genetic variants associated with juvenile ALS.Design, Setting, and Participants: In this multicenter family-based genetic study, trio whole-exome sequencing was performed to identify the disease-associated gene in a case series of unrelated patients diagnosed with juvenile ALS and severe growth retardation. The patients and their family members were enrolled at academic hospitals and a government research facility between March 1, 2016, and March 13, 2020, and were observed until October 1, 2020. Whole-exome sequencing was also performed in a series of patients with juvenile ALS. A total of 66 patients with juvenile ALS and 6258 adult patients with ALS participated in the study. Patients were selected for the study based on their diagnosis, and all eligible participants were enrolled in the study. None of the participants had a family history of neurological disorders, suggesting de novo variants as the underlying genetic mechanism.Main Outcomes and Measures: De novo variants present only in the index case and not in unaffected family members.Results: Trio whole-exome sequencing was performed in 3 patients diagnosed with juvenile ALS and their parents. An additional 63 patients with juvenile ALS and 6258 adult patients with ALS were subsequently screened for variants in the SPTLC1 gene. De novo variants in SPTLC1 (p.Ala20Ser in 2 patients and p.Ser331Tyr in 1 patient) were identified in 3 unrelated patients diagnosed with juvenile ALS and failure to thrive. A fourth variant (p.Leu39del) was identified in a patient with juvenile ALS where parental DNA was unavailable. Variants in this gene have been previously shown to be associated with autosomal-dominant hereditary sensory autonomic neuropathy, type 1A, by disrupting an essential enzyme complex in the sphingolipid synthesis pathway.Conclusions and Relevance: These data broaden the phenotype associated with SPTLC1 and suggest that patients presenting with juvenile ALS should be screened for variants in this gene.</p

Genome-wide Analyses Identify KIF5A as a Novel ALS Gene.

To identify novel genes associated with ALS, we undertook two lines of investigation. We carried out a genome-wide association study comparing 20,806 ALS cases and 59,804 controls. Independently, we performed a rare variant burden analysis comparing 1,138 index familial ALS cases and 19,494 controls. Through both approaches, we identified kinesin family member 5A (KIF5A) as a novel gene associated with ALS. Interestingly, mutations predominantly in the N-terminal motor domain of KIF5A are causative for two neurodegenerative diseases: hereditary spastic paraplegia (SPG10) and Charcot-Marie-Tooth type 2 (CMT2). In contrast, ALS-associated mutations are primarily located at the C-terminal cargo-binding tail domain and patients harboring loss-of-function mutations displayed an extended survival relative to typical ALS cases. Taken together, these results broaden the phenotype spectrum resulting from mutations in KIF5A and strengthen the role of cytoskeletal defects in the pathogenesis of ALS

Association of Variants in the SPTLC1 Gene with Juvenile Amyotrophic Lateral Sclerosis

Importance: Juvenile amyotrophic lateral sclerosis (ALS) is a rare form of ALS characterized by age of symptom onset less than 25 years and a variable presentation. Objective: To identify the genetic variants associated with juvenile ALS. Design, Setting, and Participants: In this multicenter family-based genetic study, trio whole-exome sequencing was performed to identify the disease-associated gene in a case series of unrelated patients diagnosed with juvenile ALS and severe growth retardation. The patients and their family members were enrolled at academic hospitals and a government research facility between March 1, 2016, and March 13, 2020, and were observed until October 1, 2020. Whole-exome sequencing was also performed in a series of patients with juvenile ALS. A total of 66 patients with juvenile ALS and 6258 adult patients with ALS participated in the study. Patients were selected for the study based on their diagnosis, and all eligible participants were enrolled in the study. None of the participants had a family history of neurological disorders, suggesting de novo variants as the underlying genetic mechanism. Main Outcomes and Measures: De novo variants present only in the index case and not in unaffected family members. Results: Trio whole-exome sequencing was performed in 3 patients diagnosed with juvenile ALS and their parents. An additional 63 patients with juvenile ALS and 6258 adult patients with ALS were subsequently screened for variants in the SPTLC1 gene. De novo variants in SPTLC1 (p.Ala20Ser in 2 patients and p.Ser331Tyr in 1 patient) were identified in 3 unrelated patients diagnosed with juvenile ALS and failure to thrive. A fourth variant (p.Leu39del) was identified in a patient with juvenile ALS where parental DNA was unavailable. Variants in this gene have been previously shown to be associated with autosomal-dominant hereditary sensory autonomic neuropathy, type 1A, by disrupting an essential enzyme complex in the sphingolipid synthesis pathway. Conclusions and Relevance: These data broaden the phenotype associated with SPTLC1 and suggest that patients presenting with juvenile ALS should be screened for variants in this gene.