Facebook Support Group Research Articles

“Is There Something Wrong with What I Asked”? Digital Strategies for Achieving and Safeguarding Social Capital and Identity in a Facebook Support Group for Israeli Parents

This study aimed to investigate how a Facebook support group for parents of young children (ages 0–6) defines its boundaries and evaluates the acceptability of its members and content to safeguard the group’s social capital and identity. Adopting a qualitative critical content analysis approach, this research examined the discourse within the Sane and Rational (S&R) Parents group. This group, which had more than 12,000 members, describes itself as an alternative to groups that address parenting problems through “homeopathy, talismans, energies, and communicating with past incarnations”. Common subjects addressed by the group included medical issues, sleeping problems, potty training, child behavior, and nutrition. For the purpose of this study, a representative sample of 10 discourses (out of 118) that appeared during the research period was selected. The analysis considered group discourse, including both verbal and non-verbal elements such as emojis. Three central themes were revealed: (1) exclusion of participants through rules and emojis; (2) filtering posts as a mechanism for defining in-group and out-group boundaries; and (3) division of roles as a tool for distinguishing between those who do and do not belong. This study identifies power-based digital strategies used by a Facebook parent group to maintain its social capital and identity. It also highlights how verbal and non-verbal communication shapes, and is shaped by, group relationships. Practically, the findings offer tools for professionals to better understand how parental support needs are met in the digital age, emphasizing the importance of face-to-face interventions for those who feel excluded from dominant social identities.

Ambivalent Speculations: Learning to Live with Barrett’s Esophagus in the UK Using Facebook Support Groups

ABSTRACT Drawing on fieldwork in Facebook support groups, in this article I explore how people, now patients, learnt to live with Barrett’s esophagus, a risk state or “precancer” for a type of esophageal cancer. This diagnosis brought the possibility of both facing and averting cancerous futures into the present. Far from passive recipients, members worked to foreground speculations of “wanted futures” in which prompt surveillance successfully prevented cancer deaths, transforming cancer risk into an opportunity for hope. Speculation here was an ambivalent and active process, involving not only the “observation of potentiality,” but the opening up and foreclosing of both desirable and undesirable potentialities.

Letting go of self-transformation? lurkers’ tactics of body acceptance in and against an online support group for polycystic ovary syndrome

ABSTRACT Research often suggests that online support groups validate their members’ experiences, but feminists and sociologists have argued that they may also embrace individualistic or biomedical perspectives. Interviews with women with polycystic ovary syndrome (PCOS), associated with weight gain, highlighted that reading other women’s painful experiences in a Facebook support group helped them to accept their bodies, but that the group was replete with unwanted weight loss advice. Making sense of these contradictions this article makes three contributions. First, the findings illustrate that the way in which online support groups validate their members’ experiences may be more subterfuge and contradictory than previously thought. Second, the observations contribute to feminist research on online body positivity, as the women articulated an ambiguous desire to let themselves be rather than sought to become either traditionally thin and beautiful or in a popular feminist spirit confidently big and beautiful. Following from this observation, the article draws on and contributes to feminist media studies discussions on post- and popular feminism, suggesting that the women articulated a barely articulable emerging structure of feeling of yearning to let go of self-transformation, which pervades official health advice, support groups and much feminist content online.

Support sought and offered online for miscarriage: content analysis of a Facebook miscarriage support group

Objective Responses to miscarriage can vary, with many, but not all, people describing inadequate support, feelings of isolation and significant psychological distress. Limited knowledge exists about the support that people seek and offer online following miscarriage. We aimed to explore how people impacted by miscarriage use an online Facebook support group to seek and offer support. Methods and Measures We employed directed content analysis to examine 270 opening posts and 3,484 responding comments within an ‘open’ Facebook support group for miscarriage. Opening posts and responding comments were coded into five social support categories using an existing support framework. Results Informational Support, particularly medical information or advice, was the most commonly sought support in opening posts, followed by Emotional Support, where people expressed their grief-related feelings. In responding comments, Emotional Support and Informational Support were predominantly offered. Conclusion While not a substitute for appropriate medical care, people impacted by miscarriage seek and offer support online. Health professionals should be aware of this behaviour and discuss potential benefits and risks of online support with patients. A social support framework may usefully guide health professionals in identifying patients’ support needs and in knowing how to support patients.

Role of self-esteem and personal mastery on the association between social support and resilience among COVID-19 long haulers

Although the COVID-19 mortality rate is declining, the number of individuals dealing with persistent COVID-19 symptoms is increasing worldwide, making long COVID a global public health concern. People with long COVID (long haulers) often deal with physical and mental stressors. Long haulers’ psychological resilience could play a key role in coping with these stressors in intercorrelation with psychosocial resources. The current study aims to test a hypothesized relationship between social support and its functions (i.e., instrumental and emotional) and the resilience of long haulers through serial mediation by personal mastery and self-esteem. A cross-sectional and self-administered online survey was conducted among 460 individuals with long COVID recruited from COVID-19 Facebook support groups in the United States. Analyzing data indicated a positive correlation between social support and the resilience of long haulers. Structural equation modeling suggested that self-esteem and personal mastery fully mediated the association between social (instrumental) support and resilience. Personal mastery also mediated the association between self-esteem and resilience in social (instrumental) support models. However, in the emotional support model, the indirect effect was non-significant for the mediation by personal mastery and self-esteem. Findings suggest that social support, mainly instrumental support, may protect long haulers by promoting their resilience through self-esteem and personal mastery. This study emphasizes the importance of including social support services in designing programs for COVID-19 long haulers.

A Multidisciplinary Assessment of ChatGPT's Knowledge of Amyloidosis: Observational Study.

Amyloidosis, a rare multisystem condition, often requires complex, multidisciplinary care. Its low prevalence underscores the importance of efforts to ensure the availability of high-quality patient education materials for better outcomes. ChatGPT (OpenAI) is a large language model powered by artificial intelligence that offers a potential avenue for disseminating accurate, reliable, and accessible educational resources for both patients and providers. Its user-friendly interface, engaging conversational responses, and the capability for users to ask follow-up questions make it a promising future tool in delivering accurate and tailored information to patients. We performed a multidisciplinary assessment of the accuracy, reproducibility, and readability of ChatGPT in answering questions related to amyloidosis. In total, 98 amyloidosis questions related to cardiology, gastroenterology, and neurology were curated from medical societies, institutions, and amyloidosis Facebook support groups and inputted into ChatGPT-3.5 and ChatGPT-4. Cardiology- and gastroenterology-related responses were independently graded by a board-certified cardiologist and gastroenterologist, respectively, who specialize in amyloidosis. These 2 reviewers (RG and DCK) also graded general questions for which disagreements were resolved with discussion. Neurology-related responses were graded by a board-certified neurologist (AAH) who specializes in amyloidosis. Reviewers used the following grading scale: (1) comprehensive, (2) correct but inadequate, (3) some correct and some incorrect, and (4) completely incorrect. Questions were stratified by categories for further analysis. Reproducibility was assessed by inputting each question twice into each model. The readability of ChatGPT-4 responses was also evaluated using the Textstat library in Python (Python Software Foundation) and the Textstat readability package in R software (R Foundation for Statistical Computing). ChatGPT-4 (n=98) provided 93 (95%) responses with accurate information, and 82 (84%) were comprehensive. ChatGPT-3.5 (n=83) provided 74 (89%) responses with accurate information, and 66 (79%) were comprehensive. When examined by question category, ChatGTP-4 and ChatGPT-3.5 provided 53 (95%) and 48 (86%) comprehensive responses, respectively, to "general questions" (n=56). When examined by subject, ChatGPT-4 and ChatGPT-3.5 performed best in response to cardiology questions (n=12) with both models producing 10 (83%) comprehensive responses. For gastroenterology (n=15), ChatGPT-4 received comprehensive grades for 9 (60%) responses, and ChatGPT-3.5 provided 8 (53%) responses. Overall, 96 of 98 (98%) responses for ChatGPT-4 and 73 of 83 (88%) for ChatGPT-3.5 were reproducible. The readability of ChatGPT-4's responses ranged from 10th to beyond graduate US grade levels with an average of 15.5 (SD 1.9). Large language models are a promising tool for accurate and reliable health information for patients living with amyloidosis. However, ChatGPT's responses exceeded the American Medical Association's recommended fifth- to sixth-grade reading level. Future studies focusing on improving response accuracy and readability are warranted. Prior to widespread implementation, the technology's limitations and ethical implications must be further explored to ensure patient safety and equitable implementation.

The Use of Diets to Improve the Quality of Life of Women With Breast Cancer.

There has been an increase in the incidence of breast cancer cases in the last decade, and despite the treatment increasing the chances of survival, it reduces the quality of life. In this context, diets could decrease the adverse effects of treatment and improve quality of life. A form with the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire, which contains specific scores for physical, cognitive, emotional, symptomatic, and functional performance, was made available in a Facebook support group. Afterward, the data were analyzed using linear regression and a t-test of independent samples using Jamovi version 2.3.24 (retrieved from https://www.jamovi.org). There was a low number of participants who followed the ketogenic diet or intermittent fasting. In general, adherence to the diets was good. In the t-test, diets showed improvement in physical performance. Linear regression correlated treatment with chemotherapy, metastases, and bad diet adherence with worse symptomatic scores. There is evidence that diets can improve the symptoms of these patients; however, there is no consensus about which diet produces the best effect, requiring further studies on this subject.

What do spouse primary caregivers of patients with glioblastoma want medical providers to know? A qualitative thematic reflexive analysis of letters written by primary caregivers from a secret Facebook support group

ObjectivesTo analyse the content of letters written by female spouse primary caregivers of patients with glioblastoma multiforme (GBM), a devastating and terminal primary brain cancer, and give voice to their...

Human-Computer Interaction in Times of Grief: Unveiling Support Processes Among COVID-19 Bereaved Users in a Facebook Group Through Netnography

During the early waves of the COVID-19 pandemic in Italy, social distancing hindered mourners in their help-seeking. A netnographic approach was employed to investigate grief and empathy expressions on a Facebook support group, created for the purpose and moderated by a psychologist. Participants (23 Females, 2 Males) knew about the research and co-participated in the improvement of the group experience. The virtual space was used by group members with two different purposes: some mainly vented their anger but others created a new and coherent narration of their loss. Differently from other peer-to-peer support groups, users supported each other continuously and in some cases took up the role of moderators. The results shed light on continuous peer support and user-driven moderation dynamics, advancing our understanding of online groups moderated by professionals. The study also prompts reflection on distinct aspects of grieving on social media during the initial 2 years of the pandemic.

Access to dermatologic care and provider impact on hidradenitis suppurativa care: global survey insights.

Hidradenitis suppurativa (HS) is an understudied disease, and current HS studies have focused on participants already connected to dermatologic care. We surveyed participants in online HS support communities to gain a comprehensive understanding of how provider type impacts HS disease management and the issues individuals with HS face when accessing care. From June 13 to June 30, 2021, we administered an anonymous cross-sectional online survey to HS Facebook support group participants who had a self-confirmed diagnosis of HS. Survey items assessed respondent demographics, primary HS provider, and barriers to HS care and pain management. Descriptive analyses are presented. The survey was viewed 5,168 times and 1,040 surveys met eligibility criteria (20.1%). Survey participants were 97% female and 72% White. Seventy-two percentage resided in the United States and 22% in Europe. Forty-seven percentage reported having a dermatologist as their primary HS provider, 38% reported a nondermatologist, and 15% reported no HS provider. We found that Asian race, full-time employment, private health insurance, and urban setting were each associated with higher rates of having a dermatologist as a primary HS provider. However, 43.7% of those with a dermatologist reported biologic use, as compared with 14.5% with nondermatologist HS providers. Our cohort was notably more severely impacted by comorbid diseases; 55.9% of our cohort had anxiety, 53.6% had depression, and 50.7% had obesity. Overall, 74.2% of our cohort reported experiencing stigma while accessing care for their HS. Participant recruitment via social media platform facilitates recruitment of individuals across the spectrum of healthcare access, but may introduce selection bias and favor well-resourced areas. Self-reported data may be subject to recall bias. Our study provides unique insights into the characteristics and experiences of individuals with HS across the spectrum of health care access.

Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome

BackgroundFor a variety of reasons, raising a child with 22q11.2DS has significant psychosocial and financial repercussions for the family caregivers. Our aim was to identify and explain the expectations and concerns of Polish parents of 22q11.2DS children. An online survey was developed consisting of four sections: demographics, emotions experienced by caregivers while performing their duties, attitudes of the respondents about providing care, and finally different aspects of the caregivers’ life satisfaction. The study was conducted with the support of the Polish 22q11 Association.ResultsForty-four caregivers of Polish origin completed the survey, all but one of whom were mothers. Thirty-four per cent (n = 15/44) declared full-time employment. According to 73% (n = 32/44) of those surveyed, the child’s disease has not harmed their relationship with the partner. In spite of the fact that the median diagnosis time was 1.9 years (ranging from 0 to 12 years), the caregivers indicated that they had contacted on average 3.9 doctors before obtaining the right diagnosis (range 1–17). The Internet was the main source of information and knowledge about their child’s disease for 93% of respondents (n = 41/44), while for 54% (n = 24/44) it was the association for people with 22q11DS. Only 26% rated as very good or good the support for caregivers offered by the central and local government or its agendas. The physicians’ knowledge about 22q11DS was positively rated by 14% of respondents (n = 6/44). The most frequently chosen source of support for 66% of respondents (n = 29/44) turned out to be their families, and for 34% – a Facebook support group (n = 15/44). Asked how often they rated their quality of life (QoL) highly, none of our respondents chose the option “always”, although 64% (28/44) gave the answer “often”.ConclusionOur study is the first one in Poland to develop an online survey specifically for use with caregivers of paediatric patients with 22q11.2DS. Our respondents revealed that caring for 22q11.2 children entails a burden that extends far beyond clinical facets and has a significant impact on every dimension of the caregivers’ lives, including their mental health, everyday activities, families, professional career and social lives. At the same time, caregivers are de facto left alone with the bureaucracy of the healthcare system.

Qualitative study of the consequences of vaccine-induced immune thrombocytopenia and thrombosis: the experiences of family members

ObjectivesTo explore the experiences of family members of patients who died or survived following a diagnosis of vaccine-induced immune thrombocytopenia and thrombosis (VITT).DesignA semistructured qualitative study, conducted via Zoom.SettingParticipants discussed...

Pregnancy in Medical Training: A Survey of Physician Moms on Their Experiences During Residency and Fellowship

Resident physicians undergo physically and emotionally rigorous training; this is particularly difficult for the pregnant resident and affects their unborn child. This study aims to elucidate pregnant residents' perspectives regarding their prenatal and postnatal experiences, across all specialties, with a focus on pregnancy complications, postpartum health, and policy execution. This is a nationwide cross-sectional survey study developed to characterize resident and fellow perceptions about work schedules while pregnant, perceived discrimination, complications during pregnancy, lactation and lactation support, marital distress, parental leave policy, and overall satisfaction with the parental leave period. Descriptive statistics were used to characterize survey responses. The experiences of physician mothers in online Facebook support groups: Physician Mom Group, Surgeon Mom Group, and Dr Mothers Interested in Lactation Knowledge, were queried by an electronic survey distributed using Qualtrics XM. Physicians who had children during their U.S. residency training were eligible to participate and 1,690 physician mothers from all specialties completed the survey. One thousand six hundred and ninety responses from members of the Facebook support groups were analyzed. Most surveyed physicians (1353/1519, 89.1%) were required to work until delivery and 63.6% (993/1561) of women took in-house calls during the last month of pregnancy. Half (820/1560, 52.6%) thought that the physical demands of their jobs compromised their own health and safety, or that of their child, and 1259 complications were reported among 1690 respondents, an average of three complications for every four respondents. Twenty-nine percent (442/1519, 29.1%) of physician mothers suffered from postpartum depression. Ninety-two percent (1479/1602, 92.3%) of respondents breastfed, but only one-third (483/1456, 33.2%) breastfed for more than 12 months and 52.7% (769/1458) would have liked to breastfeed longer. Marital distress was reported by nearly half (756/1650, 45.8%) of respondents during pregnancy and/or the first year of their child's life due to parental leave policies. The majority (957/1688, 56.7%) did not have a parental leave policy at their institution. Nearly two-thirds (946/1518, 62.3%) of respondents took 6 or fewer weeks off, and 79.7% (1211/1520) felt their duration of time off was inadequate. Nearly 30% (457/1593, 28.7%) stated they would recommend against a female medical student going into their field of medicine based upon their own experiences during pregnancy. Many mothers experienced discrimination from colleagues and worked until delivery despite concerns about the health and safety of themselves or their unborn children, and many reported experiencing a pregnancy-related complication. Most did not have a parental leave policy, which likely contributed to the disproportionately higher rates of postpartum depression among physician mothers compared to the general public. Residency training parental leave policies should be more accommodating to improve mental health, career satisfaction, and retention of the next generation of physician mothers.

The role of facebook support groups for women with benign urologic conditions.

To understand the availability and content of patient support groups on social media platforms. Five prevalent benign, urologic conditions affecting adult women were selected for analysis. Facebook support groups for these conditions were identified. Groups specific to one urologic condition and with at least 400 members were included, and groups for pediatric and malignant conditions were excluded. Each support group was analyzed for member count, posts per month, and period of activity. The 100 most recent posts in the largest support groups were manually reviewed and further categorized into content subsections. A total number of 56 Facebook support groups were identified that satisfied the inclusion/exclusion criteria. Interstitial cystitis (IC) had 25 groups (68 466 members; 4825 posts), pelvic organ prolapse (POP) had 14 groups (72 342; 3067), UTI had nine groups (36 414; 3204), overactive bladder and/or urinary incontinence (OAB/UI) had seven groups (8246; 306), urinary retention had one group (1168; 118). Across all groups, post content was predominantly informational support (77.6%). Remaining post content was both informational and emotional support (10.0%), emotional support only (7.6%), or unrelated to either informational or emotional support (4.8%). Individuals with benign urologic conditions are utilizing social media support groups predominantly to seek and share informational support from patient peers. The number of existing groups as well as the level of activity and number of members within individual support groups varies significantly between different urologic conditions. This suggests that there is an unmet need for accessible informational content for patients who suffer with benign urological conditions.

South African Teachers’ Attitudes Towards Working with Learners with Severe Intellectual Disabilities

ABSTRACT This study investigates South African teachers’ attitudes in schools for learners with special educational needs specifically learners with severe intellectual disability (SID) using a quantitative and descriptive online survey. The questionnaire includes the Modified Teachers’ Attitudes Scale. The theory of planned behaviour is used as an explanatory model to explore why teachers may have difficulty with their role in supporting the educational needs of learners with SID. Purposive sampling was employed to recruit teachers which are on Facebook support groups. The results based on the feedback from 221 teachers, reveal that teachers possess negative attitudes regarding the communication, socialisation, and future outcomes of learners with SID. Teachers revealed positive attitudes towards inclusion and their capabilities when teaching learners with SID. A neutral attitude was obtained towards these learners’ participation needs. The article concludes with the importance of teacher education on the nature and manifestations of the disorder to provide realistic expectations within the classroom. An additional recommendation is made addressing the management of schools requesting to fortify the use of inclusive practice and place value on input from teachers.

Development and Validation of the Parosmia Olfactory Dysfunction Outcomes Rating (DisODOR).

Develop and validate a quality-of-life (QoL) outcome measure for patients with dysosmia. Cross-sectional survey study. Otolaryngology clinics, research registries, and Facebook support groups. A 59-item pilot survey with questions addressing parosmia concerns was developed using input from subjects with parosmia and clinical expertise from Otolaryngologists. After item reduction, the Parosmia Olfactory Dysfunction Outcomes Rating (DisODOR) was reduced to its final 29 items. DisODOR maximum score is 116 (each item score 0-4) with higher scores indicating a higher degree of dysfunction from smell distortion. DisODOR was validated using participants with parosmia persisting >3 months after severe acute respiratory syndrome coronavirus 2 (cases) and healthy controls. Reliability, face and content validity, internal consistency, convergent validity, discriminative validity, sensitivity to change, and the minimal clinically important difference (MCID) were assessed. A total of 134 cases and 20 controls completed DisODOR. The mean (SD) age was 45.9 (12.2) for cases and 29.6 (8.9) for controls. The mean score difference between cases and controls was 45.0 (95% confidence interval, 40.5-49.5) displaying good discriminative validity. DisODOR showed strong test-retest reliability (r = .942) with high internal consistency (Cronbach's α = .971). DisODOR had a moderate correlation with SNOT-22 scores (r = .619) indicating good convergent validity. There is an excellent association with the global impression of severity categories (η2 = 0.447). Based on the distribution method, the MCID is 15. DisODOR is a valid, reliable QoLinstrument for parosmia that can be used to measure the functional impact and QoL impairment for parosmia patients. DisODOR is sensitive to change and thus can be used in studies investigating treatments for parosmia.

Living with vaccine-induced immune thrombocytopenia and thrombosis: a qualitative study

ObjectivesTo explore the experiences of people up to 18 months after being diagnosed with vaccine-induced immune thrombocytopenia and thrombosis (VITT).DesignA semistructured qualitative study, conducted via Zoom, of a cohort of...

SOCIAL MEDIA SUPPORT FOR WOMEN WITH ENDOMETRIOSIS: A SYSTEMATIC REVIEW

Background and Purpose: Social media is a key source of health information. Previous studies have indicated that women with endometriosis turn to the internet for information about the condition and illness management. However, there is a dearth of study on endometriosis online supportgroups. In contrast, studies examining the role of online support groups for other long-termconditions have been extensive. Addressing this gap, a systematic review of research on endometriosis support groups on social media and its efficacy were conducted.
 
 Methodology: Using a qualitative systematic review method and Meta-Analyses Protocols (PRISMA-P)., research database namely Research Gate, Springer, Wiley Online Library, Science Direct, Jstore, PubMed were manually searched using keywords such as "social support," "endometriosis support online," and "Facebook support & online communication". The review examined research related to endometriosis support on Facebook. Based on inclusion and exclusion criteria, 100 full-text papers were extracted from the initial 200 publications found. 36 papers were selected following the appraisal stage and thematically analysed. 
 
 Findings: Social media platform namely Endometriosis Facebook support groups are found to set expectations, provide education, and highlight ways to manage chronic illness. Three prominent themes were identified: (1) topics related to social media support groups, (2) efficiency of Virtual Help Communities for Endometriosis Patients, and (3) forms of support that women with endometriosis require.
 
 Contributions: The findings support two primary points. Endometriosis Facebook support groups educate women about the illness, connects them with others in similar situations, and promotes illness discussion and networking, hence pointing to the potential benefit of Facebook support groups as a platform to provide both support and education. 
 
 Keywords: Health communication, women health research, social media, online support, endometriosis.
 
 Cite as: Kaur, K., Ibrahim, N. A., & Wan Adnan, W. N. A. (2023). Social media support for women with endometriosis: A systematic review. Journal of Nusantara Studies, 8(1), 287-313. http://dx.doi.org/10.24200/jonus.vol8iss2pp287-313

Caregiver Experiences of Feeding Instruction for Infants Born With Cleft Lip and/or Palate

Purpose: The purpose of this pilot study was to attempt to describe how feeding education was provided to a group of caregivers of infants with cleft lip and/or palate and how they viewed the feeding experience. Method: Participants (n=5) were recruited from two Facebook support groups, Cleft Lip and Palate Support Group and Cleft Mom Support. The data were collected using Qualtrics™ software. The questionnaire consisted of eight demographic questions and seven topic-specific questions. The demographic questions included the exclusion and inclusion criteria. The participants of this study were required to be an English-speaking parent or a caregiver of a child under one year of age with non-syndromic cleft lip and/or palate. While six participants qualified, only five continued on to complete the topic-specific questions. Results: Four of five participants reported receiving feeding education from a speech-language pathologist, and all reported being provided follow-up care in regard to feeding. Three out of five participants mentioned the use of specific bottles in regard to the feeding education they were provided. Three out of five participants also described using Facebook support groups to acquire additional feeding information. Conclusion: This study helps to clarify the importance of speech-language pathologists’ role in cranio-facial teams as providers of feeding therapy to infants born with cleft lip and/or palate.

Patient-led advocacy in ALK-positive lung cancer.

Patient-led advocacy organizations in the anaplastic lymphoma kinase (ALK)-positive lung cancer space are becoming increasingly influential. ALK Positive Inc. (hereafter "ALK Positive") is probably the most widely known among these organizations. Evolving from a private Facebook Support Group created in 2015 to provide a forum for ALK-positive lung cancer patients and caregivers to exchange information, empathy and support, ALK Positive transitioned in 2021 into a 501(c)(3) non-profit organization (NPO), with the mission to improve the life expectancy and quality of life for ALK-positive cancer patients worldwide. This review provides a historical perspective on the growth, activities and aspirations of ALK Positive to pursue patient advocacy and enable development of new therapies for individuals with ALK-positive cancers. This growth has been enabled by the collaborative efforts of ALK-positive cancer patients, their care-partners and oncologists, academic researchers, other NPO advocacy organizations, and members of the biotech and pharma communities who develop new therapies for ALK-positive cancers. ALK Positive has grown to provide a variety of patient services, to award competitive support for translational research and clinical trials intended to enable new therapies and improved quality and extent of life for ALK-positive cancer patients, and to collaborate with industry and academia to accelerate the development of improved therapies for ALK-positive cancer patients. ALK Positive continues grappling with a variety of challenges including further improving patient quality of life, enabling the development of new therapies, and extending its already substantial global reach and impact. This review summarizes many of the tangible impacts and aspirations engendered by ALK Positive for ALK-positive cancer patients in the past, present and future tenses-where we have been, where we stand and where we hope to go. The content is based on the historical recollections of the authors, and is accurate as of November 30, 2022, to the best of the authors' knowledge.