Your Best Self: New Ways of Thinking About Disability & Support – The Hypersomnia Foundation’s virtual hypersomnia education event – held Saturday, January 30, 2021.
Learn about the emotional aspects of disability and how to choose the right support group for you – or even start your own.
Speakers:
𝐀𝐧𝐣𝐞𝐥 𝐁𝐮𝐫𝐠𝐞𝐬𝐬, 𝐄𝐬𝐪., of Burgess & Christensen in Atlanta, is a prominent disability attorney and HF Board member and has represented numerous people with IH who are applying for disability. She shares her observations of the emotional aspects of that journey, and how to manage those hurdles, whether or not you expect to apply for disability benefits.
𝐃𝐢𝐚𝐧𝐚 𝐊𝐢𝐦𝐦𝐞𝐥 of the Hypersomnia Alliance is a well-known (and extraordinary) patient advocate in the IH community, co-organizes the popular “Snooze Cruise” retreats, and facilitates a support group in Atlanta. Diana shares what makes a support group successful, and the nuts and bolts of organizing virtual and in-person groups. Video Rating: / 5
This episode of The DisabiliTEA features Claire Wylds Wright, CEO of the Hypersomnia Foundation, discussing idiopathic hypersomnia and the organization’s efforts to provide support and raise funds for research on the condition. Claire also shares her personal experience as a caregiver for a child with narcolepsy.
Highlights
💡 Hypersomnia Foundation: A non-profit organization providing support, events, and research funding for people with idiopathic hypersomnia.
💤 Idiopathic Hypersomnia: A poorly understood sleep disorder characterized by excessive sleepiness and poor quality of rest.
🏥 Delayed Diagnosis: Many people with sleep disorders face a delayed diagnosis due to the lack of awareness and understanding among healthcare professionals.
🧠 Research and Clinical Trials: Emphasis on the importance of research, clinical trials, and patient participation in accelerating the development of effective treatments for sleep disorders.
👩👧👦 Caregiver Support: Acknowledgment of the impact on caregivers and the need for support and advocacy in navigating the complexities of managing a sleep disorder.
The DisabiliTEA video podcast, hosted by disability attorney Anjel Burgess, is a candid discussion of all things related to disability. Anjel Burgess is the Managing Attorney at the law firm of Burgess & Christensen. Burgess & Christensen specializes in helping adults and children across the United States receive social security disability benefits.
In this episode of The DisabiliTEA, Anjel interviews Claire Wylds-Wright, CEO of the Hypersomnia Foundation.
Matt Rogers has the perfect DIY for any kid’s room, a wrestling bed! This easy craft is inexpensive with the entire bed costing only to make. While fun, this bed is just for looks and should not be used as a real wrestling ring.
Try Matt’s DIY Wrestling Bed here: http://www.hallmarkchannel.com/home-and-family/how-to/diy-wrestling-bed-for-kids Video Rating: / 5
Boxing Ring Inspired Bed: The Ultimate Creativity In Bedroom Interior #BoxingRingInspiredBed #boxingday
See also: https://dreamingartsus.com/boxing-ring-inspired-bed/
BW: 173.3lbs
Shoutout to Ivan Djuric for the inspiration.
https://www.youtube.com/channel/UCqffvr3tqWOR5Oyq16t5-kQ
ATG or Death
ATG GANG!
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I wouldn’t have been able to do this without the guidance and support from my cousin Nic.
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https://youtube.com/channel/UCAQXlvfsuaJSKWHSaiYZlRg Video Rating: / 5
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Haley shared three things we all should know about IH. But we want to hear from you? What else should the general public know about idiopathic hypersomnia. Let us know in the comments below 👇
#ThisIsIH #forthesleepyones #hypersomniaawareness #idiopathichypersomnia #sleepdisorder #FakeAwake Video Rating: / 5
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