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Elephant in the Room Foundation
Founded2013
FounderVeronica Luccioni, Dwina Luccioni (co-founders)
Founded atLos Angeles, California
TypeNonprofit organization, Charity
Registration no.HMRC Reference No. XT36417
FocusSupport for individuals with anorexia nervosa and their families
Area served
Worldwide
MethodEducation, raising awareness
Websitewww.eitrf.org

The Elephant in the Room Foundation is a registered charity and non-profit organization, with leading figures based in the United States and United Kingdom [2]. The foundation was created in 2013 by Veronica and Dwina Luccioni to raise awareness of, and help victims and their families recover from, the effects of eating disorders, particularly focusing on anorexia nervosa, organizing campaigns and providing advice about how the disorder works and can be fought. The foundation is a registered charity with HMRC in the UK.

History

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The Elephant in the Room Foundation was originally founded in 2013, a year after its co-founder Veronica Luccioni’s daughter Dwina had recovered from her struggle with anorexia. Having experienced this, the two founded the Elephant in the Room Foundation to raise awareness to anorexia, how it develops in those who suffer from it, misconceptions about it and how it can be combated by sufferers and their families. [3]

In addition to the Luccionis, almost all the other major figures involved with the foundation also have personal experience of working with children supporting those with anorexia; Gina Stewart and Viviana Bagnato have worked as a secondary school teacher and to engage children with art activities, while Pam Pierce, Lydia Haam and Deborah Danson have all worked with sufferers of anorexia and Dr Shan Guisinger is an expert in treating eating disorders with published research on anorexia specifically. [4]

Organization and campaigns

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Destigmatizing anorexia

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The Elephant in the Room Foundation rejects the idea of anorexia as a lifestyle choice, arguing that its sufferers are ‘unfairly portrayed as making unreasonable choices’ [5] and that this contributes to a poor understanding of how to help them and encourages sufferers and those close to them to blame themselves. It also advises that anorexic ‘is not a shameful word’ and that the condition’s existence needs to be accepted by the sufferer before recovery is possible. [6]

In addition, it has pointed out the limitations to the way the DSM V Diagnostic Criteria for Eating Disorders are used to rigidly define if someone is suffering from anorexia, [7] and tries to give advice to early warning signs of the condition developing and ‘to provide information and support before the condition develops into a medical emergency’. [8]

Medical advice

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Based on research advanced by its medical expert, Dr Shan Guisinger, as well as Professor Bryan Lask and Dr Ian Frampton, the Elephant in the Room Foundation provides information and resources to help explain why anorexia happens and how it progresses. Guisinger’s research suggests that ‘The visual cortex [of an anorexic] is literally blinded to their own body contours while the brain region responsible for body image is hyperactive’, [9] and that this causes anorexics not to perceive their bodies as experiencing dangerous levels of weight loss. Similarly, a paper published by Guisinger in 2003 for Psychological Review describes anorexia as tied into archaic adaptive behavior from when humans were nomadic foragers; [10] unlike humans from that time, modern-day anorexics’ starvation response is not stopped by a natural cue to start feeding again unless it comes from outside intervention.

Lask and Frampton similarly point to problems with the insula of the brain, noting its role in ‘helping ensure that we eat what we need to feel less hungry, that we enjoy what we eat, and that we do not disgrace ourselves in the way we do it’ [11]

The Foundation promotes and publishes the findings of this research on its website to provide easily accessible resources to anorexics and those close to them in order to ensure better understanding of how the condition works, why those with it experience it the way they do, and how their loved ones can effectively help them through it, [12] as well as seeking to address misconceptions that the condition arises wholly from environmental factors. [13] In addition, it heavily emphasizes that despite the biological connections of anorexia, those who suffer from it can still overcome it with the right support and understanding. [14]

Early intervention

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One of the most important preventative and recovery methods the Elephant in the Room Foundation advocates for is early intervention, which it argues ‘often makes the difference between full recovery and a possible death’. [15] To help with identifying and treating anorexia early, it provides advice on early signs of anorexic behavior (including an interest in food but avoiding eating it themselves, efforts to exercise more than normal, aggressiveness and wearing smaller or baggier clothes), [16] and advocates for healthy weight gain as a crucial part of recovery both to stop anorexics’ starvation response and ensure they do not become or remain malnourished. [17]

Raising awareness

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The Elephant in the Room Foundation also seeks to raise awareness and understanding of anorexia, noting that ‘The general public typically uses the term anorexia/anorexic loosely’ [18] and seeking to clarify when an eating disorder is or is not anorexia. It also uses social media to promote its medical advice about the condition, such as in a 2019 video it produced with Professor Bryan Lask titled ‘Highlighting Science to End Stigma’, [19] and sharing graphics and information from its website to Facebook to gather a broader audience.

References

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  1. ^ < "Elephant in the Room Foundation Facebook page". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  2. ^ < "'Who we are', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  3. ^ "'The Founder's Story', Elephant in the Room Foundation website". Elephant in the Room Foundation. Archived from the original on 18 December 2021. {{cite web}}: |archive-date= / |archive-url= timestamp mismatch; 30 November 2009 suggested (help); Text "<" ignored (help)
  4. ^ < "'Who we are', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  5. ^ < "'Ending a stigma', Elephant in the Room Foundation website". Elephant in the Room Foundation. {{cite web}}: Check |url= value (help)CS1 maint: url-status (link)
  6. ^ < "'What are the signs?', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  7. ^ < "'Substance Abuse and Mental Health Services Administration. DSM-5 Changes: Implications for Child Serious Emotional Disturbance [Internet]. Rockville (MD): Substance Abuse and Mental Health Services Administration (US); 2016 Jun. Table 19, DSM-IV to DSM-5 Anorexia Nervosa Comparison.' <". NCBI.{{cite web}}: CS1 maint: url-status (link)
  8. ^ < "'Understanding the definition', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  9. ^ < "'A guide for Patients and their Families: Understanding & Overcoming Anorexia Nervosa', Adapted to Famine". Guisinger, S.{{cite web}}: CS1 maint: url-status (link)
  10. ^ Guisinger, S. (2003). "'Adapted to flee famine: Adding an evolutionary perspective on anorexia nervosa'". Psychological Review. 110 (4): 745–761. {{cite journal}}: |access-date= requires |url= (help)
  11. ^ Nunn; Frampton; Gordon; Lask (2008). "'The Fault Is Not in her Parents but in Her Insula- a Neurobiological Hypothesis of Anorexia Nervosa'". European Eating Disorder Review (16): 353–360.
  12. ^ < "'How anorexia progresses', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  13. ^ < "'Ending a stigma', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  14. ^ < "'Perspective matters', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  15. ^ < "Homepage, Elephant in the Room Foundation website". Elephant in the Room Foundation. {{cite web}}: Check |url= value (help)CS1 maint: url-status (link)
  16. ^ < "'What are the signs?', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  17. ^ < "'What to do? Early intervention', Elephant in the Room Foundation website". Elephant in the Room Foundation. {{cite web}}: Check |url= value (help)CS1 maint: url-status (link)
  18. ^ < "'Our mission', Elephant in the Room Foundation website". Elephant in the Room Foundation.{{cite web}}: CS1 maint: url-status (link)
  19. ^ < "'Highlighting Science to End Stigma', Elephant in the Room Facebook page". Elephant in the Room Facebook page.{{cite web}}: CS1 maint: url-status (link)
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Category:Medical and health foundations Category: Medical and health foundations in the United States