Here Comes Mavo! Artist credit: Yiqiao Wang

“This is exactly why we have created “Mavo!”, not only to deliver powerful authentic and culturally relevant programming for deaf children who have been vastly left out of this educational experience, but also to revolutionize the future of storytelling and animation.”

WASHINGTON (PRWEB)
April 28, 2022

Gallaudet University’s Motion Light Lab and Pigmental Studios announced today they are launching “Here Comes Mavo!”, the first animated children’s television series featuring a Deaf lead character and 3D avatars who use sign language. This ground-breaking series is designed to advance Deaf-led storytelling, increase diversity and engagement in entertainment, and make sign language in animation a prolific worldwide reality.

Gallaudet and Pigmental have created “Here Comes Mavo!” to be the definitive destination for both deaf and hearing children to learn and use sign language while being educated in socio-emotional concepts and, as importantly, entertained. With plans in discussion for global distribution and the inclusion of different sign languages, “Here Comes Mavo!” will feature 52 eleven-minute episodes including “Embarrassed,” “Confused” and “Curious”, all centered on the magical land of the Baobab Universe. It is here, in her hometown, where Mavo, a curious eight-year-old Deaf girl, stumbles into the roots of a tree, learning how to cope with her emotions and finding ways to communicate her feelings with the other characters in this adventurous world.

“Mavo!” was created to address the lack of aspirational Deaf and signing characters in children’s media. The series has four primary goals: increase appreciation and awareness of Deaf cultures, Deaf communities, the Deaf experience and Deaf ways of being; introduce viewers to signed language; encourage viewers to use and value visual communication; and support viewers’ social-emotional learning (SEL). In addition to allowing deaf children to see themselves authentically and positively represented in powerful roles in media, “Mavo!” also supports hearing children to explore and grow their knowledge about different languages and cultures.

Customized Motion Capture Technology Creates 3D Avatars Who Are Fluent in Sign Language

One of the distinguishing elements at the center of “Here Comes Mavo!” is a customized motion capture technology solution developed by Gallaudet University’s Motion Light Lab. This state-of-the-art motion capture technology – a multi-camera system with faceware technology — has been specifically designed to capture the unique essence and nuances of sign language, including finger and body movements and facial expressions, and to depict the complexity of movement, flow, and grammatical structures of sign language. The 3D signing characters in Mavo’s world are the first-ever avatars in a dedicated children’s series to be fluent in American Sign Language (ASL).

The lead character in “Here Comes Mavo!” was inspired by Melissa Malzkuhn, founder and director of the Motion Light Lab at Gallaudet University. Malzkuhn is a leading technologist and educator who is Deaf, a past Obama Fellow, a current Ashoka fellow, and one of the developers behind The ASL App, a leading app for learning sign language. In 2013, with an all-Deaf team, she created and launched “The Baobab”, the world’s first bilingual ASL and English storybook and the origin for the character of Mavo. More recently, Malzkuhn cofounded CREST Network, a global network to promote research and equity in sign language technologies.

The television series was created by Marina Martins, CEO and Creative Director of Pigmental Studios, working in close collaboration with Malzkuhn. An accomplished storyteller, Martins founded Pigmental Studios in 2014 as a global animation studio focused on immersive and collaborative storytelling. With studios in Washington, D.C., on the Gallaudet University campus, and Los Angeles and Ireland, Pigmental is an independent global entertainment company with dedicated financing for animated theatrical feature films and television series. For five years, Martins has been teaching a Storytelling in Animation class which focuses on teaching deaf students to tell their stories in an industry level format, engaging them in all aspects of the studio.

“In a time where diversity and inclusion are vital how is it possible that there is not a single dedicated animated television show, catering to the deaf community and sign language users?” asked Malzkuhn. “This is exactly why we have created “Mavo!”, not only to deliver powerful authentic and culturally relevant programming for deaf children who have been vastly left out of this educational experience, but also to revolutionize the future of storytelling and animation.”

“We are very excited to be collaborating with Gallaudet University to launch this ground-breaking new children’s series,” said Martins. “This is so much more than a TV show, this is about closing a significant gap in the entertainment world and delivering on the critical need for storytelling by and for the deaf community. Mavo without question will bring a much-needed leap forward of greater linguistic and cultural diversity to our industry and inform the development of inclusive storytelling forever.”

“Here Comes Mavo!” has a strong curriculum foundation. It was developed with several experts in early childhood development, neuroscience, and bilingual learning, including leaders from two prominent research laboratories at Gallaudet University — the Science of Learning Center on Visual Language and Visual Learning and the Gesture Literacy Knowledge Studio.

One of the goals of “Here Comes Mavo!”, added Malzkuhn, “is to develop a strong pipeline of deaf talents in storytelling and animation. With “Mavo!”, we definitely want to expand the opportunities for deaf students and young deaf creatives in the entertainment industry.”

Martins adds, “Pigmental’s goal is to provide a professional development, transitional working experience for students, and importantly, to provide the financial and training resources for the creation of authentic Deaf-led content to a worldwide audience.”

Gallaudet University, federally chartered in 1864, is a bilingual, diverse, multicultural institution of higher education that ensures the intellectual and professional advancement of Deaf, hard of hearing and Deafblind individuals through American Sign Language and English. The university enrolls over 1,600 students in more than 40 undergraduate majors and many master’s and doctoral programs. It also conducts research in various fields, including accessible technology, Deaf history and culture, Black Deaf history and culture, brain imaging, educational neuroscience, education, linguistics, and psychology.

Motion Light Lab (“ML2”) is an award-winning research and development lab at Gallaudet University in Washington, D.C. ML2 is part of the National Science Foundation/Gallaudet University Science of Learning Center on Visual Language and Visual Learning. ML2 engages in a wide range of research-driven projects, creative R&D, including the development and distribution of bilingual storybook apps, the provision of training to support literacy development for deaf children, and the creation of advanced 3D avatars with sign language fluency through motion capture technology. ML2’s efforts intersect creative literature and digital technology that integrate with VL2 science to create new knowledge, immersive learning experiences, and benefit society.

Pigmental Studios brings mindfully crafted stories to life through animation and authentic, cultural collaborative storytelling. A different type of animation studio, Pigmental Studios develops high value, internally owned properties that delight global and underserved audiences across many vehicles, including feature films, television, and gaming. Led by CEO and Creative Director Marina Martins, Pigmental Studios delivers groundbreaking and immersive narratives in cooperation with award-winning writers, artists, and technologists. Currently headquartered in Washington, DC, Pigmental Studios also operates globally, including Los Angeles, CA, Vancouver, Canada, and London, UK, with recent expansion into Navan, Ireland. Find out which stories we are working on by visiting pigmentalstudios.com.

Media Contacts:

Gallaudet University

Robert Weinstock

robert.weinstock@gallaudet.edu

The Durkin Agency

Alana Cowan

alanacowan5@gmail.com

PEAK’s mission is to help students to gain back hope and their love of learning so they are positioned to succeed in their education and their future. PEAK acknowledges and taps into the potential within these students by providing multisensory instruction embedded in a whole-school environment.

ELGIN, Ill. (PRWEB)
April 21, 2022

According to the National Center for Learning Disabilities, certain evidence “indicates at least 1 in 5 children in the U.S. have learning and attention issues” which include language-based learning differences such as dyslexia.

Sensing an important need to help these students, Elgin Academy, a private 501©(3) highly-regarded EC-12 independent school in the Elgin area, announces the creation of PEAK on the Hilltop, a new immersive program specifically designed for students with average/above average intelligence diagnosed with dyslexia, dysgraphia, and dyscalculia.    

Dyslexia describes a learning condition that is characterized by those having difficulty reading due to identifying speech sounds and learning how they relate to letters and words. Dysgraphia refers to the condition of impaired letter writing by hand. Dyscalculia denotes a learning disability affecting a person’s ability to perform basic arithmetic.

“PEAK’s mission is to help students to gain back hope and their love of learning so they are positioned to succeed in their education and their future,” says Elgin Academy Head of School Seth Hanford. “PEAK acknowledges and taps into the potential within these students by providing multisensory instruction embedded in a whole-school environment.”

PEAK offers credentialed faculty instructing students in all the core content areas with an important focus on language, literacy, and math; a cohort style with a student teacher ratio no larger than 5:1; and school days that combine time in the cohorts and time-integrated into other classes to provide an opportunity to interact with a broader group of students.

“Families whose students are enrolled in PEAK will see many benefits,” Hanford continued. “For example, instead of finding funds to pay for tutors and staying afterschool to catch up on lessons, students will be able to use their resources and time to pursue co-curricular activities.”

PEAK will eventually be available to students in third through eighth grades. The program will be phased in during the course of upcoming school years starting with 5th and 6th grades during the 2022-23 school year and at least 4th and 7th grades in 2023-24.

For more information about PEAK, visit https://www.elginacademy.org/PEAK.

About Elgin Academy

Chartered in 1839, Elgin Academy, a private 501©(3) highly-regarded K-12 independent school in the Elgin area, is uniquely positioned to help every child realize and fulfill his or her potential and prepare them to make a positive impact on the world. The academy taps into its innovative and adaptive culture to provide a unique student experience and differentiated student support.

The academy is deliberately fulfilling its mission by offering an educational experience where kids are inspired to become creative, courageous, and compassionate. The investment made by parents, faculty, staff, alumni, and friends in the differentiated experience Elgin Academy provides helps make a positive impact on the world. For more information, visit https://www.elginacademy.org/.

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SAIL INTO SUMMER Gala May 19

Dr. Soifer’s breadth of knowledge, her passion for helping children, and her exquisite humor and charm have allowed her to have a huge impact on so many families and professionals

NORWALK, Conn. (PRWEB)
April 26, 2022

Smart Kids with Learning Disabilities, Inc. will hold its Annual Benefit Gala, SAIL INTO SUMMER, on Thursday, May 19 at the Indian Harbor Yacht Club in Greenwich, CT.

At the Gala, Smart Kids with LD will present a Lifetime Achievement Award to Lydia H. Soifer, Ph.D. Dr. Soifer is a renowned pediatric language and literacy specialist, whose experience includes over 45 years in clinical practice, educational consulting, and university teaching. She was the founder and director of The Soifer Center for Learning and Child Development, the first multidisciplinary diagnostic and remedial setting in Westchester County for 25 years, and continues to provide educational consultation and advocacy services to families.

Dr. Soifer specializes in the role of language in the development of children’s learning, literacy, behavior, and social-emotional development. Dr. Soifer states, “Helping parents and teachers know how to answer the question, “Who is this child?”, has been my great joy professionally. Being acknowledged by an exemplary organization like Smart Kids with Learning Disabilities for doing what I love, is incredibly humbling.”

Dr. Soifer is a member of the Board of Trustees of Eagle Hill School in Greenwich, CT and The Gateway School in New York City, and serves as a member of the Smart Kids with LD Professional Advisory Board. She is also an Assistant Professor at the Albert Einstein School of Medicine, the author of a chapter in a key textbook on Multisensory Structured Language Teaching, and presents regularly to parent as well as professional groups.

Dr. Chris Bogart, President of the Board of Smart Kids with LD and co-Executive Director of the Sasco River Center notes, “I have had the pleasure of working with Lydia for more than two decades. Her breadth of knowledge, her passion for helping children, and her exquisite humor and charm have allowed her to have a huge impact on so many families and professionals.”

During the Gala celebration, Smart Kids with LD will also honor the 2022 Fred J. Epstein Youth Achievement Award recipients. Ilana Epstein Grady, co-chair of the Youth Achievement Award Committee and the daughter of the late Dr. Fred J. Epstein, in whose honor the awards are named, said, “These awards honor a group of young people from around the country for their remarkable accomplishments, despite the many academic obstacles they have faced. Hearing their stories is always an inspiring part of the evening.”

The Gala will feature a cocktail reception, dinner, and silent and live auctions. Sherry Truhlar of Red Apple Auctions will serve as Master of Ceremonies and Auctioneer. Gala tickets at $250 and $500 are available at the Sail Into Summer Gala website.

Among the exciting auction items are:

• An opportunity to name a character in an upcoming novel by #1 New York Times bestselling author, Chris Bohjalian, whose books include The Flight Attendant (now an HBO Max thriller starring Kelly Cuoco)
• An at-home, gourmet multi-course dinner including wine pairings for eight guests, prepared by award-winning Chef Laurie Erickson, former Executive Chef at Canyon Ranch Spa in Lenox, MA featuring local, organic ingredients and vegetables
• A luxurious full week’s stay in the highly exclusive Long Bay Beach Enclave of Providenciales, Turks & Caicos. The breathtaking 5-bedroom home and accompanying 2- bedroom villa are situated on a private 3-mile white sand beach and include every imaginable luxury amenity
• Also: An evening on Broadway with house seats for Hamilton and dinner at Sardi’s, tickets for the NY Yankees v. Boston Red Sox at Yankee Stadium, tickets for the Westport Country Playhouse and Major League Soccer at Gillette Stadium in Foxborough, MA, and a fishing excursion on the Long Island Sound.

Smart Kids with LD is grateful to its generous Gala sponsors: Gold Sponsor, The Bridge Program at Wooster School; Silver Sponsors: The Eagle Hill School , Greenwich; Sasco River Center in Darien, Wilton, and Stamford, CT; The Canell Family; Winston Preparatory School with branches in Norwalk, CT, NYC, Long Island, Whippany, NJ and San Rafael, CA; and The Southport School in Southport, CT; Bronze Sponsors: The Gow School in South Wales, NY; The Gateway School in NYC; The Cedar School in Greenwich, CT; Marc Hoffman, author, educator and speaker; and The O’Hare Family.

About Smart Kids with Learning Disabilities, Inc.

Smart Kids with Learning Disabilities, Inc. is a Norwalk-based nonprofit organization dedicated to fulfilling the potential of children with learning and attention challenges by educating, inspiring and empowering their parents via its educational programs, award-winning website and blog, and free e-newsletter. The organization also educates the public about these children’s gifts and talents. Henry Winkler, Golden Globe and Emmy Award-winning actor, director and author, serves as the organization’s Honorary Chairman.

For more information, visit Smart Kids with LD.

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BRYN MAWR, Pa. (PRWEB)
April 21, 2022

As part of National Volunteer Week (April 17-23), ElderNet of Lower Merion and Narberth (“ElderNet”) recognized five volunteers yesterday for their outstanding efforts in supporting older and disabled adults in their community.

The honorees were awarded the first annual Maud Campbell Tierney Volunteer of the Year Awards, which was created in memory of Maud Campbell Tierney. Tierney, who passed away in late 2021, was an active member of the community, supporting a variety of non-profits, schools and animal shelters. Tierney also greatly enjoyed working with ElderNet, driving elderly community members to doctor’s appointments and building friendships with those she encountered.

“One of Maud’s New Year’s Resolutions in 2014 was to volunteer with ElderNet, and she was so personally rewarded by helping someone in need while also taking the worry of coordinating doctors’ appointments, shopping and meals off of their family and friends,” said Brian Tierney, Maud’s husband and CEO of Brian Communications. “My family and I are incredibly proud to establish the Maud Campbell Tierney Endowment Fund and Volunteer of the Year Awards in her honor, and we celebrate the men and women who, like Maud, focus their time and resources to giving back and helping others.”

This year’s ElderNet Volunteer of the Year Award winners are:

• 
  Andy Uhr, Driving Escort Award
• Robbie Shell, Companionship Award
• Clare Schoepp, Shopping Award
• Judy Leedy, Pantry Award
• Lynn Saligman, Extraordinary Effort Award

“We are deeply appreciative of all of our volunteers’ efforts as well as the Tierney family’s incredible support, and we extend a special thanks and congratulations to Andy, Robbie, Clare, Judy and Lynn for their exceptional work,” said Brandon Trombetta, Executive Director of ElderNet.

To learn more about ElderNet, visit https://eldernet.org.

About ElderNet

ElderNet is a nonprofit that provides a safety net for older and disabled adults in the Lower Merion and Narberth communities to help them remain in their homes with dignity and strengthens food and financial security for all community members in need of support.

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WASHINGTON (PRWEB)
April 20, 2022

Special Olympics International announced it is hosting a Global Youth Leadership Summit on 20 and 21 May 2022. The event will bring together young people aged 14 – 25 and other youth-focused organizations. This is the first global convening of Special Olympics Youth Leaders since the last in person Global Youth Leadership Summit in 2019 in Abu Dhabi. More than 150 youth and adult leaders with and without intellectual disabilities from over 35 countries came together in Abu Dhabi during World Games to share and develop their ideas for a more inclusive world. This Virtual Summit is expected to bring together over 1,000 people globally, including those new to Special Olympics. If you wish to register for this Summit, please visit the event page to register.

The two-day virtual Global Youth Leadership Summit theme is “Called to Connect.” During the Summit, young people with and without intellectual disabilities from around the globe will be united in a time of social isolation and highlight the important role they play in creating opportunities for inclusion. This event also serves as a platform to reconnect a global community of Youth Leaders before the next in-person summit “Called to Activate” which will occur next summer in Berlin, Germany alongside the 2023 Special Olympics World Summer Games.

Throughout the Virtual Global Youth Leadership Summit, Youth Leaders will receive training and tools to lead activities for social impact and inclusion in their schools and communities, while their adult counterparts will learn from their global peers on how best to engage with young people.

“Young people have been so isolated and disconnected the past two years. This Summit is an opportunity to unite and energize our global community of Youth Leaders around a shared goal for a more inclusive world. Sessions will ‘educate, enable, and engage’ these young people to be change makers through providing education, skill building, and clear actions they can take to better their own communities,” says Kaitlyn Hamrick, Director of Youth Development at Special Olympics International.

The goal is, that from the experience they receive from such an event, the participating youth will proceed to train other young people to be innovators, leaders, and social change makers for inclusion. The legacy of the Summit will be felt worldwide, as participants deploy their learnings to implement practices for inclusion in their home countries. Young people, along with the support of their adult allies, are igniting the engine of change in all parts of the world.

“vFairs is thrilled to be assisting the Special Olympics with enhancing their noble cause. We are so excited to create an event of this kind,” says Muhammad Younas, CEO vFairs.

To register or learn more, please visit the event page.

About Special Olympics

Special Olympics is the world’s largest sports organization for children and adults with intellectual disabilities and physical disabilities, providing year-round training and activities to 5 million participants and Unified Sports partners in 172 countries.

Founded in 1968, Special Olympics is a global movement to end discrimination against people with intellectual disabilities. We foster acceptance of all people through the power of sport and programming in education, health, and leadership. With more than six million athletes and Unified Sports partners in over 190 countries and territories and more than one million coaches and volunteers, Special Olympics delivers more than 30 Olympic-type sports and over 100,000 games and competitions every year. Engage with us on: Twitter, Facebook, YouTube, Instagram, LinkedIn and our blog on Medium. Learn more at http://www.SpecialOlympics.org.

About vFairs

vFairs is a virtual events platform that creates immersive 3D environments for their clients. These events enable greater global reach, as they are accessible on any mobile or tabular device. The platform provides customizable virtual experiences, packed with features such as gamifications, Q&A’s, polls, poster halls, exhibit booths, virtual auditoriums and more.

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Image of the VOSAP Exhibition lobby with accessibility features menu visible

LOS ANGELES (PRWEB)
April 20, 2022

April month is observed to spread awareness about autism. VOSAP hosted its Annual Event and Launched its Assistive Technology Exhibition on the 4th of December, 2021. This exhibition has several booths from exhibitors of products and solutions to help people with autism, learning disabilities in addition to helping people with other types of disabilities. This exhibition is open now everyday, 24×7 basis, and is free to attend for anyone, anywhere in the world. The organizers are targeting Persons with Disabilities, their family members, donors, policy leaders, innovators, investors, and assistive technology companies. This is the first virtual exhibition of assistive technology for specially-abled people open everyday! Anyone interested can register and visit the exhibition.

The VOSAP annual event combined knowledge, awareness, and collaboration with fundraising. So, it managed to raise over $350,000 on the very first day. It saw over 2,000 registrants on the launch day, and has seen consistent growth in the time since launch. To date, over 13,000 visitors have joined the virtual event. The main aim of this exhibition is for people to learn about, find, buy, and donate products and solutions to make life easier for specially-abled individuals. It also aims to bridge the gap between suppliers/innovators and consumers/NGOs. This conference is helping numerous companies enter the global market with their assistive technology solutions.

Since its launch back in December, the VOSAP exhibition has added many feathers to its hat. Innovators such as Thinkerlabs, Torchit, and Indent have come on board. This sort of success has enabled thousands of Specially Abled People to get access to the assistive technology they need to improve their lives. It plans to get thousands more visitors over the year, with new innovators added to the roster as well.

VOSAP used the vFairs platform because of its flexibility, booth functionality, stability, and informational approach. In addition, it got the help needed to keep the event live for the whole year around the clock.

Pranav Desai, the founder of VOSAP, said, “VOSAP’s assistive technology platform aims to bridge the gap between innovators, suppliers and the global market of over 1 billion specially-abled people. This is yet another global, scalable, tech initiative by VOSAP towards accelerating achieving the UN’s Sustainable Development Goals (SDGs).”

Muhammad Younas, the CEO and Founder of vFairs added, “Assistive technology is a necessity to help bring Specially Abled People get the opportunities and lifestyles they deserve. vFairs is proud to be part of such an excellent initiative, which is the first virtual event of its kind.”

The VOSAP AT Exhibition is open 24/7, anyone interested in visiting the exhibition can register through the event website.

About VOSAP

VOSAP uses technology to create a scalable global movement and become change-makers with collective thought leadership, actions, and advocacy for specially-abled people. It promotes accessibility, education, and employment opportunities with the help of assistive technology to create an inclusive society. The main aim is to help Specially Abled People get the chance they want to excel in society and live with dignity and independence.

About vFairs

vFairs is a virtual & hybrid events platform that helps organizations reach global audiences. We help organizations of all sizes host amazing online conferences, trade shows, job fairs & more. The platform offers an intuitive virtual experience along with interactive features such as audio/video chat, excellent scalability, and several customization options.

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Grace Alondra, whose hearing loss is caused by the genetic disorder NF2, marks the first time a character with neurofibromatosis (NF) has appeared in the pages of a comic book from a major publisher.

“Comics are an ideal medium to create awareness, education, and representation for people facing all kinds of challenges, including neurofibromatosis and other rare disorders.”

NEW YORK (PRWEB)
April 20, 2022

Meet Grace Alondra, Whose Hearing Loss is Caused by the Genetic Disorder NF2

Archie Comics and the Children’s Tumor Foundation are pleased to announce the latest issue of ARCHIE JUMBO COMICS DIGEST will introduce the first member of its iconic cast of characters to experience hearing loss. Meet Grace Alondra, who also marks the first time a character living with neurofibromatosis (NF) has appeared in the pages of a comic book from a major publisher. Grace will make her debut in an eight-page short called “Sounds Like Music” that will appear in ARCHIE JUMBO COMICS DIGEST #329 in comic shops April 20, 2022.

Archie worked with the Children’s Tumor Foundation to create this character in order to shine a light on the many individuals living with NF2, a genetic disorder that causes tumors to grow on nerves in the body, and which often leads to hearing loss. The disease affects 1 in 25,000 births of all populations equally. The comic is part of the Foundation’s global awareness campaign that launches at the end of April and continues throughout May, which is NF Awareness Month.

In “Sounds like Music,” Archie and the gang meet Grace, a young Latina woman who loves music and especially her favorite band, The Archies. Spunky and smart, Grace isn’t letting her journey toward hearing loss define her. Instead, she is eager to hear all the great music she can, while she can.

Grace’s journey is all too familiar to individuals with this diagnosis, which is most often discovered in the teen to young adult years. “As a long-time music fan, I first learned that I would lose my hearing in college, so I set out to listen to all the music I could so I could keep it deep in my memory,” said Matt Hay, who lives with NF2. “I was creating a soundtrack for a life I had not yet lived.” Matt was diagnosed in his early college years and eventually lost all hearing due to NF2.

The inclusion of Grace continues Archie’s commitment to introducing diverse and differently-abled characters in its various ongoing comics series. Archie Comics Editor-in-Chief Mike Pellerito is enthusiastic about bringing this character into the classic Archie Universe. “Grace is a talented and whip-smart teenager,” he said. “The fact that she’s experiencing hearing loss is only one part of her story. To me, this is the stuff that really matters, and we’re proud to be working with the Children’s Tumor Foundation on an important story like this.”

“Sounds like Music” was written by veteran comic book writer Alex Simmons whose Archie Comics work has been hailed as both entertaining and educational. Art is by Bill Galvan, Ben Galvan, Glenn Whitmore, and Jack Morelli.

“We’re incredibly grateful for the support of Archie Comics in our mission to increase knowledge of NF to new audiences, particularly readers of comic books,” said Simon Vukelj, Chief Marketing Officer of the Children’s Tumor Foundation. “In addition to the health challenges NF patients face in their day-to-day lives, they also find that many people simply have never heard of NF. This partnership with Archie will go a long way to changing that, and will help give voice to all NF patients.”

The Children’s Tumor Foundation has developed and released three previous comics stories independently, with three more currently in progress. “Comics are an ideal medium to create awareness, education, and representation for people facing all kinds of challenges, including neurofibromatosis and other rare disorders,” said Vanessa Younger, Communications Director at the Children’s Tumor Foundation, who oversees the Foundation’s comics program. “The inclusion of a character living with NF2 in this Archie story is the next step in this initiative, and we are actively working on more.”

CTF’s current “NF Comics” titles include “Understanding NF2,” “Moxie and Sparx Explain NF1,” and “Moxie and Sparx Introduce the Accelerator”; the Foundation’s comic books, including Archie’s “Sounds Like Music,” are available to freely download or read on the CTF website at ctf.org/comics.

ABOUT ARCHIE COMICS

Archie Comics is the leading mass market comic book publisher in the world and the home to a wide array of the most popular humor, action-adventure, and superhero characters in entertainment, including Archie, Jughead, Betty and Veronica, Reggie, Kevin Keller, Josie and the Pussycats, Sabrina the Teenage Witch, Afterlife With Archie, the Dark Circle Comics superhero characters (The Black Hood, The Fox, The Shield, Sam Hill and more), Li’l Jinx, and many more. Archie Comics have sold over 2 billion comics worldwide and are published around the world in a number of languages. In addition to comics, the Archie Comics characters are spotlighted weekly on The CW’s Riverdale TV series, and have been featured in animation, television, film, and music throughout its 80+ year history.

ABOUT CHILDREN’S TUMOR FOUNDATION

The Children’s Tumor Foundation is the world’s leading nonprofit dedicated to funding and driving innovative research that will result in effective treatments for the millions of people worldwide living with NF, a group of genetic disorders that cause tumors to grow on nerves throughout the body. One in every 3,000 people is born with some type of neurofibromatosis or schwannomatosis, which may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, or cancer. NF affects all populations equally, and while there is no cure yet, the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters its vision of one day ending NF. For more information, please visit ctf.org.

Teaching clinicians about disabilities is different than empowering them with true clinical competency.

Diagnostic overshadowing [is] the tendency of the healthcare provider or clinician to ascribe a particular behavior that a person is exhibiting, simply to the fact that they have a disability, rather than looking for some treatable underlying cause.

CLEARWATER, Fla. (PRWEB)
April 18, 2022

The lack of training for healthcare providers specifically related to treating people with intellectual and developmental disabilities (IDD) has been a matter of discussion for many years. Healthcare workers attending to people with IDD—from the supporter to the clinician—inadvertently have put this population at risk because they lack the necessary training to fully meet their healthcare needs. “Advocates and some physicians have maintained that this compromised ability of the healthcare community to meet the needs of people with IDD is a form of discrimination” says Dr. Craig Escudé, physician and president of IntellectAbility.

According to the American Academy of Developmental Medicine and Dentistry (AADMD), the average life expectancy of people with IDD is more than 60 years now, as compared to years ago when their average life expectancy was less than 20 years.(1) Physicians like Escudé have pointed out how the healthcare community is not always aligning their objectives with these changes. “With people with IDD living longer, it is even more vital that they receive appropriate healthcare services, including preventive care, to ensure the best quality of life,” says Escudé.

“Even as a former physician leader at the Centers for Medicare and Medicaid Services, and a parent of a son with a developmental disability, I had limited understanding of the healthcare needs of people with disabilities until our family experienced the negative impacts of poorly trained clinicians,” says Dr. Mai Pham, from the Institute of Exceptional Care, a prominent organization working to improve healthcare for people with IDD who contributed to a National Council on Disability paper entitled Health Equity Framework for People with Disabilities. “There is desperate need to support healthcare practitioners in overcoming outdated assumptions about people with disabilities and gaining the cultural and clinical competencies they need to serve all patients well.”

The NCD paper addresses the disparities in healthcare treatment for individuals with IDD, including how it is exacerbated by the lack of medical training. The paper highlighted the physical and systemic barriers that stand in the way of sufficient access to healthcare for people with disabilities.(2)

One example of this, which is referenced in the NCD paper, is a tendency for women with IDD to be on the lower end of rates of breast cancer and cervical cancer screenings, as opposed to their non-disabled peers, who are examined for these conditions at higher rates. The NCD also mentions how the COVID-19 pandemic exposed the discrimination that people with intellectual disabilities experience regarding the medical services they receive.

Several studies have shown that people with IDD are more likely to both contract COVID-19 and to die from it. One recent study reports that people with intellectual disabilities are 5.9 times more likely to die from COVID, which makes having an intellectual or developmental disability the second greatest risk factor, second only to age, for dying from COVID.(3)

The NCD paper addresses “diagnostic overshadowing,” which has been a longtime concern of Escudé’s. Escudé refers to diagnostic overshadowing as “the tendency of the healthcare provider or clinician to ascribe a particular behavior that a person is exhibiting, simply to the fact that they have a disability, rather than looking for some treatable underlying cause.”

NCD Recommendations

The NCD has put forth a recommendation that the United States Department of Health and Human Services create “model comprehensive disability clinical-care competency curricula.” The curriculum would consist of an 8-point framework of areas that need to be adequately addressed in order to work towards the elimination of these disparities in healthcare for people with IDD. The purpose of the curricula is to make it available for adoption by medical, nursing and healthcare schools in the United States. But even for schools that choose to develop their own curriculum, NCD recommends those schools address all eight elements from the framework. Below are the eight points that make up the NCD’s framework to be used for school curriculum:

• 
      Competency 1: Contextual and Conceptual Frameworks on Disability
•     Competency 2: Professionalism and Patient-Centered Care
•     Competency 3: Legal Obligations and Responsibilities for Caring for Patients with Disabilities
•     Competency 4: Teams- and Systems-Based Practice
•     Competency 5: Clinical Assessment
•     Competency 6: Clinical Care Over the Lifespan and During Transitions
•     Competency 7: Effective Communication
•     Competency 8: Advocacy

Of these eight points, Escudé says that the areas that require the most attention are numbers 5 and 6, Clinical Assessment and Clinical Care Over the Lifespan and During Transitions. “Teaching clinicians about disabilities is different than empowering them with true clinical competency. It requires education specifically geared at increasing the clinical skills necessary for appropriately assessing and treating people with IDD which goes above and beyond what is normally taught to students. It’s not just simply teaching how to treat aspiration pneumonia, for instance, which is more common in individuals with IDD,” explains Escudé, “it’s understanding why people with IDD are at increased risk, how early signs of the condition may appear differently, what behaviors might be present that can indicate that this medical condition is happening, and how to create a treatment plan that is specific to meet the needs of a person with IDD.”

Escudé also emphasizes that the need for better training goes beyond just healthcare workers. Parents, supporters, and anyone else close to a person with IDD who can advocate for their care are the most likely people to notice early signs of health destabilization and alert medical professionals as to what is happening. “I would recommend that anyone who provides supports and services to people with IDD should receive training specifically geared towards recognizing health destabilization and knowing what to do about it because they’re often the front line.”

And while theoretical knowledge is definitely necessary, there is also an equally strong need for healthcare professionals to undergo hands-on clinical care training that is geared towards providing healthcare for people with IDD. Escudé explains that these measures can be implemented by employing more people with IDD as model patients in training curricula and having more people with disabilities participate in training programs in medical schools, nursing schools and residency programs. “It’s important to interact with people with disabilities outside of the medical community, as well, to gain more of an understanding of how they are just like everyone else,” Escudé believes. “Even though the quality of life for people with intellectual disabilities may be different, it certainly doesn’t mean that it’s lower or that they should be valued any less.”

There are helpful tools out there to improve medical training and services received by people with intellectual disabilities. One of these tools is the Curriculum in IDD Healthcare.(4) It’s a 6-module, online course that teaches the fundamentals of IDD healthcare to both medical students and practicing clinicians.

According to what medical professionals like Escudé, along with government entities such as the NCD, have outlined, there is a clear need for change in two areas: First, there is a need for more clinical training for medical professionals that is tailored to individuals with disabilities. This should encompass both theoretical and hands-on training. And second, there is a need to break down physical and systemic barriers to access to healthcare services for people with intellectual disabilities.

“We need to see people with IDD as people, first, and treat them as one would any other patient. The healthcare industry bears responsibility to help people with IDD live the best and healthiest life they can. Thankfully, the NCD, a nationally recognized and well-respected entity, is taking action based on solid expertise and evidence. Change is coming at last,” says Escudé.

About IntellectAbility:

IntellectAbility provides tools and training to agencies, governmental entities and supporters of people with intellectual and developmental disabilities and other vulnerabilities to foster early recognition and mitigation of health risks thereby improving health and wellness. One such tool is the Health Risk Screening Tool (HRST), of which they are the sole developer, producer, and distributor. The web based HRST is the most widely used and validated health risk screening instrument for people with intellectual and developmental disabilities. IntellectAbility also provides numerous health-related and person-centered service trainings for supporters of people with IDD. With unrelenting focus, IntellectAbility works to fulfill its mission of improving health and quality of life for people with intellectual and developmental disabilities and other vulnerabilities. For more information, visit ReplacingRisk.com.

Sources

1.    Macias, Melba. “Medical Students Need to Learn More About Needs of IDD Patients.” Enabling Devices; 29 March 2021; enablingdevices.com/blog/medical-students-need-to-learn-more-about-needs-of-idd-patients/

2.    “Health Equity Framework for People with Disabilities.” National Council on Disability; Accessed 7 April 2022; acrobat.adobe.com/link/review?uri=urn:aaid:scds:US:736fd600-6683-3327-9473-4274c271bd2c

3.    Jonathan Gleason, Wendy Ross, Alexander Fossi, Heather Blonsky, Jane Tobias, Mary Stephens; “The Devastating Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States”; 5 March 2021; NEJM Innovations in Care Delivery; catalyst.nejm.org/doi/full/10.1056/CAT.21.0051#:

4.    IntellectAbility; replacingrisk.com/academy/idd-training-curriculum/