Hacking Hypermobility

10: Year in Review 2022 - Zebra Edition

Hacking Hypermobility

Show Notes

NOTE: Hacking Hypermobility UNMASKED - We opted to leave all of our stumbling, umms, and off-topic squirrelling in this episode. As a result, the episode is 3 hours long! This episode is also the season one finale. The Bendy Mommas are going to enjoy a hiatus for a little bit before we buckle down and solidify plans for season two. Keep up with us on our socials in the mean time! ----- The Bendy Mommas close out the season with a recap of the Zebra news from 2022. Luna and Shelli’s 2022 wrap-up has all the news you missed pertinent to Hypermobility and Neurodivergence including all the new medical research in the inherited connective tissue disorders including the Ehlers-Danlos Syndromes, Joint Hypermobility Syndrome, Autism, ADHD, genetics, CRISPR gene editing, therapeutics, treatments, community and even some celebrity news. We appreciate YOU, our listeners so very much. Thank you for a successful first season! If you have any questions or comments for future episodes please send us a message (voice, audio, or video) at [email protected]. Be sure to give us permission to use your likeness and if you want us to use your name or not. ----- You may find all the resources on our website under the blog: https://www.hackinghypermobility.com/post/2022-year-in-review-of-zebra-news

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Luna and Shelli review the good, bad, and the hilarious from their time at the EDS Society's 2026 Global Learning Conference.

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We're baaaaaaack. Buckle up, buttercups, this season opener is almost two hours long! References: EDS Society 2026 Global Learning Conference Information: https://www.ehlers-danlos.com/2026-global-learning-conference/ Petrucci-Nelson T, Guilhaumou S, Berrandou TE, Gensemer C, Georges A, Huff M, Fustier MA, Esmael A, Henry J, Jaye O, Phookan R, Dooley S, Byerly K, Loizzi B, Fenner R, Mach E, Weintraub A, Daylor V, Weninger J, Koren N, Bistran E, Griggs C, Griggs M, Severance S, Byrd R, Patel S, Kautz SA, Maitland A, Bouatia-Naji N, Norris RA. Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from Genome-Wide Association Study Meta-analysis. medRxiv [Preprint]. 2025 Sep 21:2025.09.19.25336146. doi: 10.1101/2025.09.19.25336146. PMID: 41001447; PMCID: PMC12458961. Griggs M, Daylor V, Petrucci T, Weintraub A, Huff M, Willey S, Byerly K, Loizzi B, Morningstar J, Ball LE, Bethard JR, Drake R, Sharma A, Eichinger JK, Nichols M, Kautz S, Shapiro S, Maitland A, Patel S, Norris RA, Gensemer C. Proteomic discoveries in hypermobile Ehlers-Danlos syndrome reveal insights into disease pathophysiology. Immunohorizons. 2025 Sep 17;9(10):vlaf044. doi: 10.1093/immhor/vlaf044. PMID: 40972649; PMCID: PMC12448790. Gensemer C, Petrucci T, Beck T, Daylor V, Griggs M, Griggs C, Weintraub A, Byerly K, Guo L, Morningstar J, Kornblau I, Biggs R, Moore K, Koren N, Hastings C, Oberlies E, Zientara ER, Devey E, Dooley S, Stayer K, Fenner R, Singleton K, Luzbetak S, Bear D, Byrd R, Weninger J, Bistran E, Beeson G, Kerns J, Osterhaus M, Fleck E, Schnaudigel J, Butler S, Severance S, Kendall W, Delaney JR, Judge DP, Chen P, Yao H, Guz J, Awgulewitsch A, Kautz SA, Mukherjee R, Price R, Henderson F Sr, Shapiro S, Francomano CA, Kovacic JC, Lavallee M, Kontorovich AR, Berrandou TE, Slaugenhaupt SA, Milan D, Maitland A, Patel S, Bouatia-Naji N, Norris RA. KLK15 alters connective tissues in hypermobile Ehlers-Danlos syndrome. iScience. 2025 Aug 12;28(9):113343. doi: 10.1016/j.isci.2025.113343. PMID: 40949095; PMCID: PMC12424230. Due to size limitations, the preceding is a truncated list of studies referenced in this episode. Check out https://hackinghypermobility.com for a complete list.

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Dr. Akilah Cadet is the founder and CEO of Change Cadet, an organizational development consulting firm. As a Forbes Next 1000 entrepreneur, her work is behind some of the biggest brands that you use every day. Dismantling white supremacy through storytelling is at the core of her work as a leader, speaker, creative director, producer, writer and editor. Dr. Cadet is the co-owner of the Oakland Roots and Soul soccer team and author of the book White Supremacy is All Around Notes from a Black Disabled Woman in a White World.

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Summary It's our Third Birthday! Yay! Celebrate by taking a quick look back at some unseen footage from July 2022. Later in the episode, Luna and Shelli continue their conversation with Dr. Tina Wang. Keywords hypermobility, Ehlers-Danlos syndrome, community support, advocacy, personal stories, awareness, medical care, mental health, holistic approaches, podcasting Takeaways Community support is crucial for individuals with hypermobility. Personal stories can help others feel less alone in their struggles. Advocacy and awareness are essential for improving care for hypermobility disorders. The importance of holistic approaches in managing health conditions. Sharing experiences can lead to greater understanding and empathy. Elevating marginalized voices is a priority in the hypermobility community. The podcast aims to bring diverse perspectives to the forefront. Emotional health is intertwined with physical health in managing hypermobility. Future goals include expanding outreach and resources for the community. The journey of understanding and managing hypermobility is ongoing and requires collaboration.

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