International Albinism Awareness Day Special

In this very special extended live episode, we celebrate the 10th International Albinism Awareness Day, established by the United Nations.Dave Brown, of AMI-tv’s NOW with Dave Brown, comes all the way to Halifax to co-host.Jennie and Dave connect with prominent guests from the albinism community, joining from all over the world.They compare experiences, discuss important advocacy work, and shine a light - but not too bright - on guests’ talents.Prepare for some laughs, poignant moments, and even some music with Outtacontroller, the band behind our theme song performing live in studio.HighlightsOuttacontroller – Low Vision Moments Theme Song (00:00)International Albinism Awareness Day Introduction (00:40)Cassandra Mendez & Casey Greer of “Rare with Flair” (05:59)What is Albinism? (12:45)Hermansky-Pudlak Syndrome (HPS) (13:31)Kristina Venning-Rose – Co-Chair, Albinism Fellowship UK (16:50)Albinism Fellowship UK (20:38)The Importance of Community (23:27)Getting Involved – Group Discussion (25:24)Outtacontroller - “Too Soon” (36:04)I.K. Ero - Director, Human Rights Advocacy at Under the Same Sun (39:24)Under the Same Sun (41:47)WHO Essential Medicines List Sunscreen Petition (43:41)Xueli Abbing - Founder of Open Eyes Foundation, UN Goodwill Ambassador & International Model (47:43)Open Eyes Foundation (50:41)Power of Representation (51:59)Institutional Change – Group Discussion (55:21)Outtacontroller - “Cheap Leather Jacket” (1:06:35)Jennifer Renee - Inclusive Beauty Influencer, Performing & Visual Artist (1:08:40)Danielle Moulds - Accessibility Consultant, Content Creator, Gamer & Streamer (1:19:37)Music Video - “Pure” by RobenX (1:26:51)RobenX – Musician, Advocate & 2024 UN Champion for International Albinism Awareness Day (1:32:38)Albinism in Arts & Entertainment – Group Discussion (1:40:10)Dave Brown - The Importance of Platform (1:53:51)Jennie Bovard - Closing Remarks (1:55:40)Outtacontroller – “Come Alive” (1:58:16)Set and Hosts Description:Jennie and Dave appear on a set, both seated in oversized red armchairs on an area rug. A TV monitor is on the left and displays guests during interviews & group discussions. The backdrop is a screen with various slow-moving drone videos of Nova Scotia landscapes. Jennie wears an oversized floral pattern blazer, jeans, and sneakers. Dave wears a dark blue blazer, jeans, and sneakers.Co-Host Info:Dave Brown - Host of NOW with Dave Brown on AMI tv, co-host. Find NOW with Dave Brown on YouTubeGuest Info:Cassandra Mendez - Rare With Flair Podcast, Accessibility Specialist, from Ohio, USA.Find Cassandra Mendez on LinkedInCasey Greer - Rare With Flair Podcast, NOAH, Descriptive Video works, from Tennessee, USA.NOAH (National Organization for Albinism and Hypopigmentation)  WebsiteRare with Flair Podcast - Website / InstagramKristina Venning-Rose – Co-Chair Albinism Fellowship UK, from London, UK.Albinism Fellowship UK WebsiteIkponwosa (I.K) Ero - Director, Human Rights Advocacy at Under the Same Sun, Former United Nations Independent Expert to the Human Rights Council, British Columbia.Under the Same Sun WebsiteFind I.K. Ero on LinkedInSign the WHO Petition to re-add sunscreen to list of Essential MedicinesXueli Abbing -  International model, UN Goodwill ambassador, founder of Open Eyes Foundation, from Netherlands.Find Xueli Abbing on LinkedInOpen Eyes Foundation WebsiteBBC Profile of XueliFollow Xueli on InstagramRobin Spinks - Head of Inclusive Design at RNIB, dad, and adventurer.Find Robin Spinks on LinkedInFollow Robin on InstagramJennifer Renee - Inclusive beauty influencer, performing and visual artist, former jump rope coach, from New York, USA.Follow Jennifer Renee on Instagram, YouTube & TikTokDanielle Moulds - accessibility consultant, content creator, prolific gamer & streamer, from Mississippi, USA.Albinism Up Close Website Follow Danielle on Instagram, YouTube  & LinkedIn RobenX - UN 2024 Champion for International Albinism Awareness Day, Musician and Advocate from Tennessee, USA, RobenX Website Find RobenX on YouTubeOuttacontroller - Band behind the podcast theme song, playing live in this episode, based in Halifax, Nova Scotia.Find Music from Outtacontroller on BandcampFollow Outtacontroller on Instagram   Host description: Jennie is a woman with shoulder-length white-blonde hair, strong glasses with purple rims. She has very pale skin and wears light makeup. Her facial expressions are animated and she often speaks with her hands. She wears a small pink stud nose jewellery. The background includes two large bookcases, full of a variety of books, DVDs, toys, and nicknacks.  About Low Vision Moments:Part story time, part comedy, part awareness driven, Jennie Bovard presents funny experiences that happen when you are blind or partially sighted. Jennie Bovard is a running, beer-drinking, thirtysomething with albinism. She loves trying all the things, making people laugh, and volunteering to create accessible sport and recreation opportunities in her community. Jennie, who has lived with partial sight all her life, has a diploma in film and TV production. Jennie lives in Halifax. About AMIAMI is a not-for-profit media company that entertains, informs and empowers Canadians who are blind or partially sighted. Operating three broadcast services, AMI-tv and AMI-audio in English and AMI-télé in French, AMI’s vision is to establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through inclusion, representation, accessible media, reflection, representation and portrayal. Learn more at AMI.caConnect on Twitter @AccessibleMediaOn Instagram @accessiblemediaincOn Facebook at @AccessibleMediaIncEmail [email protected] Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.