Archive for 2023

Ridiculous Excuses Not to Be Inclusive

March 15th, 2023 by Cole Wilkes

Ridiculous Excuses Not to Be Inclusive

March 15th, 2023 by Cole Wilkes

 
There are no more acceptable excuses to discriminate! Children, teenagers and young men and women who have Down syndrome share true-life episodes of discrimination and ableism.
 

Milan, Denver, Mar 15, 2023 (GLOBE NEWSWIRE) — CoorDown is partnering with the Global Down Syndrome FoundationDown’s Syndrome Association (UK)Down Syndrome Australia and other organizations to celebrate World Down Syndrome Day 2023. To mark the occasion, CoorDown presents RIDICULOUS EXCUSES NOT TO BE INCLUSIVE, the international awareness campaign created in collaboration with SMALL NY and TikTok.  WATCH VIDEO

In a world increasingly focused on inclusion, there are still those who roll out ridiculous excuses not to be inclusive. On World Down Syndrome Day, March 21 2023, CoorDown – the National Coordination of Associations of People with Down Syndrome – is launching the international awareness campaign “RIDICULOUS EXCUSES NOT TO BE INCLUSIVE,” to affirm the right to full participation in society and inclusion of people with intellectual disabilities, free from all forms of discrimination and ableism.

Over the past few months, with the help of associations from all over the world, CoorDown has been asking people who have Down syndrome, and their families, what excuses they have heard for being excluded from education, sports, jobs, and other opportunities. Some of these excuses were so incredibly ridiculous that they deserved to be brought to life and properly celebrated. This is where the film draws its inspiration from: in a comic,  yet bitter, tone of voice it tells precisely the most frequently used excuses for denying access and legitimate space to people with disabilities. It illustrates, in five scenes, episodes of everyday ableism, from being excluded  from class trips, in the workplace, at school, playing sports, at summer camps and in the wider community.

 

  • “It’s not your fault, we’re the ones who are not prepared to take you on the field trip!”
  • “We already have a child like you in the group,”
  •  “We don’t have enough chairs to invite you to the meeting,”
  • “We closed registration just ten minutes ago!”

 

These are some of the ridiculous excuses given, excuses that deny people who have Down syndrome the chance to fully participate.

But there are no acceptable excuses not to be inclusive.

In the coming days, until March 21, CoorDown’s TikTok channel will feature real testimonies from people who have Down syndrome and their families from all over the world and the ridiculous excuses they have had to hear. To this, TikTok users will add their stories inspired by the campaign’s jingle and a specially created sticker, as well as the official hashtag #RidiculousExcuses.

In nearly two decades since its establishment, CoorDown has witnessed many achievements in terms of rights and inclusion, but people with Down syndrome still face episodes of discrimination and exclusion every day. People with intellectual disabilities, in fact, still must fight for a place in school, summer camps, sports, the workplace and social life.

Exclusion today is almost never direct and explicit; ridiculous excuses are often made to hide a starker truth and discriminatory attitude. People with disabilities suffer systematic disadvantages in all areas of their lives due to a pervasive, treacherous, and invisible mechanism that is taken “for granted,” what is called out-and-out ableism.

Ableism is a word with a broad meaning that concerns the often unconscious and unacknowledged norms, common sense, and codes that shape our ideas and representations about disability. Talking about ableism aims to expose how discrimination is a cross-cutting issue that also affects people with other disabilities or neurodiversity, but not only. It is also necessary to bring attention to other types of diversity and disadvantaged social groups who experience the same issues.

The film “Ridiculous Excuses” will be available exclusively on CoorDown’s TikTok channel on launch day and then spread across all the organization’s platforms. The campaign is a collaboration with agency SMALL New York and was produced by Indiana Production and Tinygiant and directed by Stoney Sharp. Music was composed and produced by Stabbiolo Music.

This year’s international campaign was again produced with contributions from several international associations including Down’s Syndrome Association (UK), Down Syndrome Australia, Global Down Syndrome Foundation, New Zealand Down Syndrome Association, Best Buddies International, National Down Syndrome Society, Karachi Down Syndrome Program and under the patronage of DSi – Down Syndrome International.

The official hashtags of the campaign #RidiculousExcuses #WorldDownSyndromeDay #WDSD23.

Antonella Falugiani, President of CoorDown ODV: “With this global campaign we touch on an issue that concerns each of us: naming and making visible a phenomenon that people with Down syndrome and their parents, brothers, sisters and caregivers experience on a daily basis. They may seem like small events, but in reality, they are real discriminations often done with a smile of circumstance or unawareness that nevertheless mark the lives and hearts of those who suffer them. The time has come to break down this wall as well and expose the false “good intentions” of those who out of laziness or lack of understanding still exclude people with intellectual disabilities. With this campaign we will give space and voice to boys, girls, children and adults with their families who will tell us how many ridiculous excuses they have had to listen to and how they reacted to assert their right to participate and decide on every aspect of their lives.

Luca Lorenzini and Luca Pannese, Executive Creative Directors, SMALL New York: “We are very happy to partner with CoorDown again for World Down Syndrome Day. When we heard what kind of excuses people with Down syndrome and their families were receiving for being excluded, we said that these excuses deserved to be brought to light and ridiculed. With our friends at Stabbiolo, we came up with a jingle that would emphasize how absurd these arguments really were. Wouldn’t it be nice if all those who are discriminated against learned this jingle and sang it as a response to those who, with a smirk, make excuses for exclusion? Wouldn’t it be nice if people with Down syndrome learned it, yes, but also people with other disabilities, or any other person who is discriminated against?

Giacomo Lev Mannheimer, Head of Government Relations & Public Policy Southern Europe, TikTok: “We have often experienced how the creators of our community, through their originality manage to overcome language, cultural and social barriers, creating awareness and stances on issues that are taboo, niche, or not particularly “cool.” Their success demonstrates how authenticity can be an incredible vehicle for awareness campaigns: a global megaphone as well as a catalyst for engaging and making millions of people think about socially indispensable issues. All from stories of “extraordinary” everyday life. Given this similarity of purpose and worlds, we are thrilled to embrace CoorDown’s project: the campaign is innovative and touching, and we can’t wait to see what the community will create and the positive impact the stories shared will generate.

Karim Bartoletti, Partner/MD/Executive Producer, Indiana Production: ”It is an honor for me to support and be part of the World Down Syndrome Day Campaign and collaborate with Coordown and the creative agency SMALL, not only for the cause that we have been supporting for four years now, but also for the partnership between the Client, the Agency  and Us, which has consolidated every year into a unique and united team. This year, the insight and the communication strategy required us to create a production project that would get inspiration from a certain type of TV-based iconography, so to allow the real “ridiculous excuses” that we staged as comedic skits to impact our audience in a stronger, clearer, true-er manner, through a jingle and a logo typical of a certain type of sitcom and television-based comedy which adds a bitter sweet underline to the ridiculousness of the excuse we just heard. This American sitcom iconography from which we got our inspiration, necessarily brought us to produce the project in the US, entrusting the direction of the campaign to a comedy director/author of the caliber of Stoney Sharp, who we brought on board thanks to the effort of the New York based production company Tinygiant. I believe that the perfectly constructed situations in which we have placed a carefully chosen cast of actors, have allowed the directorial treatment of the creativity to explode into a highly impactful and, hopefully, very successful campaign for people with Down Syndrome and with disabilities that we will surely support every year through the advocacy activity of our productions.”

World Down Syndrome Day (WDSD) is a global event – created by Down Syndrome International and officially sanctioned by a UN resolution – designed to spread awareness and knowledge about Down syndrome, to create a new culture of diversity, and to promote respect and inclusion in society for all people with Down syndrome. The choice of the date 21/3 is not accidental: Down syndrome, also known as Trisomy 21, is characterized by the presence of an extra chromosome – three instead of two – in chromosome pair No. 21 within cells. The theme of this year’s World Day is “With Us Not For Us,” and aims to turn the spotlight on one of the rights too often overlooked in the debate and inclusion policies. Indeed, the United Nations Convention on the Rights of Persons with Disabilities calls for the full and effective participation of people with disabilities, each with the right to be treated equally and to have the same opportunities as everyone else, working together with others to improve their lives. Sometimes, however, the idea persists that people with Down syndrome are “objects of charity and solidarity,” deserving of pity and support from others, who do actions or campaigns “for” them and not “with” them. People with disabilities must be able to exercise the freedom to make their own choices and must receive full and effective support over which they can have control. On World Down Syndrome Day, all organizations of people with disabilities will demand to be included in the decision-making processes of national and international institutions and to have representation.

COORDOWN ODV

The Coordinamento delle associazioni delle persone con sindrome di Down was created in 1987 with the aim of promoting communication among the various Italian organisations engaging in the protection and promotion of the rights of people who have Down syndrome, and today it is the official representative body interacting with all Institutions. Every second Sunday of October, CoorDown promotes the National Down Syndrome Day and on 21 March of every year the World Down Syndrome Day, also by producing international communication campaigns which over the years have been awarded as many as 22 Cannes lions, of which 9 golden, at the International Festival of Creativity.

 

CREDITS

Agency: SMALL
Executive Creative Directors: 
Luca Pannese, Luca Lorenzini

Creative Director: Fabio Tridenti

Production Company: Indiana Production

Partner/MD/Executive Producer: Karim Bartoletti

Senior Producer: Lilli Auteri

Director: Stoney Sharp

DP: Joe Gabriel
Co-Production Company NY: Tinygiant

Founder/Executive Producer NY: Veronica Diaferia

Partner/Executive Producer NY: Sara Eolin

Line Producer NY: Neil Champagne

1st AD: Mark Kaufmann

2nd AD: Cody Maher

Editor: Luca Angeleri

Supporting Editor: Simone Moraca

Senior Post Producer: Alga Pastorelli

Colorist: Claudio Beltrami

Motion design & Compositing: Sincromie

Post Production Audio: Bravagente

Compositing: Alessandro Canu

Original Music: Stabbiolo Music – Alessandro Cristofori, Diego Perugini and Guido Pietrella Vocals: James Wertts, Lara Karuna, Aurion, Eugene van Hemert, Nadia Guelfi, Daria Tanasenko, Andrea Castellana

Press Office CoorDown ODV:

Paola Amicucci +39 345.7549218

ufficiostampa@coordown.it

www.coordown.it

 

Global Down Syndrome Foundation:

Anca Elena Call 720-320-3832, acall@globaldownsyndrome.org

Contact:

Anca Call
Global Down Syndrome Foundation
anca.consultant@globaldownsyndrome.org
(720) 320-3832

Autism and Down Syndrome know no borders: mothers, families and professionals laying the foundation for protection and fulfillment

DENVER, CO – February 28, 2023 – The Global Down Syndrome Foundation (GLOBAL) President and CEO, Michelle Sie Whitten, has been invited to speak on a special guest panel at the United Nations 67th Commission on the Status of Women that will take place in New York City on Friday, March 17, 2023 at 1:15 p.m. ET in United Nation Conference Room 2.   

Whitten will present on how research and medical care in the United States is elongating life and improving health outcomes for those with Down syndrome and Autism, and how this renaissance is positively changing perceptions worldwide.

Whitten will join other panelists:

  • Gabriel Cobb, Triathlete and self-advocate with Down syndrome
  • Helen Minkoulou, Parent & President of the Association for the Supervision of Child Victims of Rare Disease of Cameroon
  • Everett & Emily McKiernen, Self-advocate with autism and his mother
  • Chloe & Kurt Kondrich, Self-advocate with Down syndrome and her father
  • Zaboya Dama Adele Judith Epse Makomra, Promoter in the implementation of a day-care and socio-professional training center for people with autism and Down syndrome in Yaoundé, Cameroon
  • Yves Akamba, Vice President of the Center for Applied Research on Sustainable Development

The Sponsoring Member State is the Permanent Mission of Cameroon to the United Nations and the Sponsoring Organization is the Center for Family and Human Rights.

The symposium brings together experts, self-advocates and family members from the Down syndrome and autism communities to discuss the challenges women and families face raising children with development disabilities. It will address concrete cultural, legal and policy changes that can help families welcome and care for children with Down syndrome and/or Autism, including their transition from youth into adulthood.

In December 2011, the General Assembly declared 21 March as World Down Syndrome Day (A/RES/66/149). The General Assembly decided, with effect from 2012, to observe World Down Syndrome Day on 21 March each year.

To attend this event please RSVP by Friday, March 10, 2023 at March17UNRSVP@gmail.com. For more information and RSVP details, please visit the sponsoring organization website.

A popular video created by GLOBAL in honor of World Down Syndrome Day will be presented at the conference—watch here.

In addition to providing an important keynote presentation at the United Nations in New York City, GLOBAL will also celebrate World Down Syndrome Day with an in-person and virtual dance party on Friday, March 24. For in-person guests, GLOBAL’s World Down Syndrome Dance Party will start at 6:30 p.m. MT and feature TV and radio personality Kathie J, DJ Lo, complimentary food, drinks, a dance-off and more! Sign up here.

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome WorldTM . GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome). 

2023 February GLOBAL Newsletter

February 28th, 2023 by admin

GLOBAL Receives Grant from Salah Foundation, AcceptAbility Gala Musical Guest, UN Conference on Down Syndrome, and more – Your February Newsletter!

Experts from Children’s Hospital Colorado and CU Anschutz Medical Campus are Key Collaborators

DENVER– February 27, 2023 – Global Down Syndrome Foundation (GLOBAL) announced today that it has received a transformative grant from The Salah Foundation. The grant will fund three ambitious areas: (1) the purchase and application of important diagnostic and treatment equipment that will stop the progression of keratoconus in patients with Down syndrome, (2) a first-in-kind series of workshops for professionals and families that raise awareness and understanding related to eye and vision issues in children and adults with Down syndrome, and (3) a white paper that will inform the first medical care guidelines for eye issues and vision loss in adults with Down syndrome.  

Keratoconus is an underdiagnosed, progressive eye disease where the front layer of the eye (the cornea) thins and weakens over time causing a cone-like bulge. The condition, if left untreated, can lead to serious vision problems including blindness. While keratoconus is not reversible, earlier detection can result in proactive treatment to halt the progression of the condition and can ultimately save the patient’s vision.

It is estimated that less than 2% of the general population suffers from keratoconus versus up to 30% in the Down syndrome population.

This generous Salah grant will underwrite a Pentacam Comprehensive Eye Scanner and Cross-Linking System. The Pentacam is an important piece of equipment that provides more precise measurements of the central cornea as compared to any other ocular measurement instrument. This improves the ability of the eye clinician to diagnose ocular conditions, especially keratoconus. The Cross-Linking System is the equipment used to perform corneal cross-linking, a procedure using riboflavin and UV light to strengthen the cornea. Cross-linking is the only treatment proven to halt the progression of keratoconus and is a fairly new procedure in the U.S. that received FDA approval in 2016.

Dr. Emily McCourt, MD, Chief of Pediatric Ophthalmology at Children’s Hospital Colorado and Dr. Michael Puente, MD, pediatric ophthalmologist at the University of Colorado School of Medicine and Children’s Hospital Colorado, have treated over 500 patients with Down syndrome over the last several years, as referrals from the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

“I can tell you from first-hand experience the Pentacam and the cross-linking procedure can and will save the vision for individuals with Down syndrome,” says Dr. McCourt. “Dr. Puente and I are excited to work with GLOBAL and fulfill our ambitious goals associated with this grant.”

Dr. McCourt and Dr. Puente will be organizing the workshops and writing the white paper that will inform future guidelines on vision and eye care for adults with Down syndrome. Dr. Puente is the Director of Medical Student Education in Ophthalmology at University of Colorado School of Medicine and his interests and expertise also include eye care for adults with intellectual disabilities.

“Our meetings on this project with GLOBAL have been so exciting. I believe the results will have an extraordinary impact on the lives of hundreds of individuals with Down syndrome suffering from keratoc

onus and other eye issues. I cannot stress enough how meaningful that is to the patients and their families,” adds Dr. Puente.

“Having our 18-year-old daughter get the cross-linking procedure was life-changing,” says Jennifer Revesz. “Lauren is a wonderful daughter and sibling who happens to have a dual diagnosis of Down syndrome and Autism. To add blindness to her challenges is really unthinkable. We are so grateful to Dr. McCourt for helping us to get cross-linked and preserving Lauren’s vision.”

“Generous support from The Salah Foundation has allowed us to provide life-changing resources to the amazing people with Down syndrome we serve,” says Michelle Sie Whitten, President & CEO of GLOBAL.  “Noreen, Fred, Megan and the whole Salah family have long believed in our work, and they truly care about our children and adults with Down syndrome. With their help we are delivering on our mission to elongate life and improve outcomes – we are so grateful!” 

“We applaud the Global Down Syndrome Foundation’s work in addressing the often overlooked population of adults with Down syndrome,” says Noreen Salah Burpee, Executive Director of The Salah Foundation. “The Salah Foundation is rigorous in its grant making and we anticipate the results of this grant to inform improved, evidence-based eye care and outcomes for this community .”

The Salah Foundation has been a long-time supporter of GLOBAL, having previously provided a lead gift of $1 million for its state-of-the-art education center, as well as additional generous grants associated with life-skills and independence for adults with Down syndrome.  

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About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World TM . GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome). 

About The Salah Foundation

The Salah Foundation is a private foundation, by invitation only, that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development, and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled. To learn more, visit www.salahfoundation.org. 

 

 

 

Congressional Leaders Create Down Syndrome Taskforce

February 14th, 2023 by Cole Wilkes