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Catching up with GLOBAL Ambassador Clarissa Capuano and Actress Midori Francis

From Down Syndrome World Issue 2, 2024

At 17 years old, Clarissa Capuano has it all: amazing friends at Denver’s Cherry Creek High School, a spot on the varsity swim team, and, of course, her Italian-Hispanic family consisting of her mom Carol, her dad Dominic, and older brothers Jessey and Alec (not to mention a slew of adoring aunts and uncles). She’s known for reveling in both sides of her ethnicity and for being feisty, determined, and so, so full of love.

Like many children with Down syndrome, Clarissa has overcome her fair share of health challenges. She is, as a result, very familiar with the Sie Center for Down Syndrome at Children’s Hospital Colorado. Clarissa’s experience there and her relationship with the Sie Center’s Director of Therapies and Senior Physical Therapist, Pat Winders – who helped her learn how to walk – inspired Clarissa to work towards a career in healthcare.

“I want to help people like she does,” Clarissa explains.

While Clarissa wants to grow up and become a doctor, actor Midori Francis, plays a surgical intern on the hit ABC medical drama, Grey’s Anatomy.

Midori met Clarissa at the Be Beautiful Be Yourself Fashion Show, and was quick to offer Clarissa a bounty of sage advice. She started with the classic “Don’t give up!” before adding a needed dose of realism: “But be flexible… allow your passions to grow and change with you. Ask for help and put yourself out there.”

Midori may not have a medical background, but she has a lot in common with her character, Dr. Mika Yasuda.

“We are both five foot two,” Midori jokes, “we are both scrappy. We are both quick to get worked up.”

“But Mika is a doctor, and I am an actor,” she continues, “And I think what doctors have to do is much harder, and that their jobs are much more important.

ADVOCACY & INCLUSION

The comparison is born out of a reverence for healthcare workers, not a snub of her own craft. The responsibility of a platform, especially the responsibility she holds as an Asian actor, is not lost on her.

“We underestimate how much information we get from our screens, from pop-culture, and from the media we consume,” notes Midori.

She adds that, too often, when we don’t have the privilege of interacting with people different from ourselves, our brains automatically develop a narrative about those people based on what little exposure we have.

“It is in our nature as human beings to want to categorize and simplify groups of people,” Midori says, “By diversifying the types of people we see represented on our screens and by having this representation be authentic and real, we open up our minds and hearts to others.”

“It’s important for people with different abilities to see themselves represented in media to show they matter,” adds Clarissa’s Aunt Gia, reflecting on the scarcity of actors with Down syndrome represented throughout her niece’s childhood, “Their accomplishments are important, and I believe it encourages others with disabilities to know that they can accomplish their dreams.”

Midori takes that to work with her every day. It’s a complicated, nuanced, heavy mess— her honest articulation reads like a poem:

“[It feels] Like a burden. Like an honor. Like a responsibility. Like a race that is rigged, and I will never win. Like a great gift. Like a thrill. Like gratitude for all those who came before me and all those to come. Like humility for all the other areas of representation I am ignorant to.”

THE SHOULDERS OF GIANTS

As GLOBAL Ambassador and a Be Beautiful Be Yourself Fashion Show model, Clarissa is often perceived as a guiding star—a peek into the future for younger people with Down syndrome and their parents. She’s often one of GLOBAL’s first calls when a media appearance needs a self-advocate—you might have seen her showing off her runway walk on Colorado & Company. How exciting to think that someone with no connection to Down syndrome could turn on their TV and have any stereotype-fueled perceptions challenged by Clarissa’s confidence, professionalism and never-ending charm.

“My mom says I’m a role model,” Clarissa says proudly. The high school junior has every reason to be confident, and her family has always made sure she knew it.

“My favorite thing about my little sister is her unwavering positivity and infectious laughter,” gushes her brother, Jessey. “And how much love she has to give,” adds her other brother, Alec.

“I absolutely love that Clarissa is always wanting to learn,” says Aunt Gia. “And she is so competitive.” 

She may be petite (just like her friend Midori), but Clarissa stands on the shoulders of giants. Imagine how many people didn’t know that individuals with Down syndrome could be actors, let alone stars of Academy Award-nominated films until they saw Zack Gottsagen in The Peanut Butter Falcon. Imagine how many were moved by Frank Stephens’ declaration to Congress that his life IS worth living, because they hadn’t seen a self-advocate stand up for themselves before. All the while, young people like Clarissa are growing up alongside stars like Sofia Sanchez and Madison Tevlin, who are smashing through more and more barriers onscreen every day.

A WORLD OF JOY AND CONNECTION

Midori humbly shares that she wasn’t very familiar with Down syndrome before the Fashion Show, and thus had “a lot of unexamined and undeveloped ideas” about the condition. Gratefully, her Grey’s Anatomy castmate, Caterina Scorsone, was there to open the door. As a GLOBAL Quincy Jones Exceptional Advocacy Awardee and dedicated mother to Pippa, who has Down syndrome, there was no one better to show Midori what she’d been missing.

“I felt like someone opened a door to me and welcomed me into their world filled with really interesting stories and people,” says Midori, “I was invited to the event by the wonderful Caterina Scorsone (my cast mate on Grey’s Anatomy) who has a long relationship with the Foundation. She uses her platform and heart to educate people about Down syndrome and I was so honored to learn.”

Midori also appreciated the lack of self-consciousness in the air and the Be Beautiful Be Yourself catwalk’s unique ability to make fashion so joyful and celebratory. Midori rocked the runway with Alexandra Shankle, a Fashion Show veteran. She fondly remembers Alexandra’s jokester antics and contagious laugh.

“I loved speaking with her,” Midori remembers, “We mostly communicated without words, but I felt like a lot was said. I can remember that interaction better than most interactions I have had in the last year.”

Similarly, Midori’s connection with Clarissa did not disappoint.

“Clarissa was so much FUN!” Midori beams, “She was totally leading our photo shoot with the poses and I just followed along. I loved how confident she was, especially because I don’t remember feeling that confident when I was her age.”

Clarissa has never met a photo op she didn’t love, but she recalls having an especially fun time hamming it up with her new friend Midori.

AUTHENTICITY EMPOWERS OTHERS

Our teen years can be a precarious time for anyone’s self- esteem, and it’s no secret that kids perceived as “different” are often subject to unfair treatment from their peers. Growing up Asian-American in a predominantly Caucasian New Jersey town in the 90’s and early 2000’s, Midori was routinely bullied for her ethnicity.

“It is a terrible feeling to be put down or bullied… to be laughed at or mocked for being who you are,” Midori shares. “But you know what’s a worse feeling, worse than any of that? The feeling like you’re never allowed to be yourself. To that end, the best compliment anyone can ever give me is that they feel like they can be themselves around me. I do not take that lightly as I know what a gift it is to feel like you can be yourself.”

Clarissa couldn’t agree more about the importance of embracing people who are “different.” Her innate drive to stand up for herself and others with disabilities is irrepressible, and the world is better off for it.

Clarissa’s dad, Dominic, has always been proud of his daughter’s instinct to look out for others.

“She is a very caring soul,” he shares, recalling Clarissa’s instinct to always show up for her friend, Ryan, in her school’s Integrated Learning Center. “She cares for him and supports him in class and she’s overall just a great friend.”

With the support of her family, mentors, and friends, Clarissa is breaking barriers and inspiring others to embrace their unique paths. Whether on the runway or pursuing a career in healthcare, Clarissa shows that true confidence comes from being unapologetically yourself. Through her advocacy and self-expression, Clarissa is not only changing the narrative for individuals with Down syndrome but encouraging us all to celebrate our differences and build a more compassionate world.

For many families, the threat of Down Syndrome Regression Disorder (DSRD) feels harrowing and constant. Gratefully, two scientists are leading the charge to understand and treat this heartbreaking condition, and thanks to one relentless mom/advocate, they’re working together.

Crnic Institute Executive Director Dr. Joaquin Espinosa and Children’s Hospital Los Angeles Director of Neuroimmunology had no idea they had been developing complementary research on DSRD until mom Linda Roan of Boulder, CO connected the dots for them. The two scientists joined forces to create the first-ever randomized clinical control trial to treat DSRD and secure its funding through NIH’s INCLUDE initiative.

Learn more about this groundbreaking clinical trial.

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Denver, CO, September 29, 2022 – Scientists and physicians from the Linda Crnic Institute for Down Syndrome at the University of Colorado, Children’s Hospital Colorado (CHCO), and Children’s Hospital Los Angeles (CHLA) have teamed up to identify effective treatments for persons suffering from Down Syndrome Regression Disorder (DSRD).

This new study, which will be funded over five years by a $5.3 million grant from the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD), is a first-in-kind holistic investigation into the potential causes of DSRD as well as promising therapeutic approaches for this debilitating condition affecting a small but growing percentage of adolescents and young adults with Down syndrome. The multidisciplinary team is led by Dr. Joaquín Espinosa, executive director of the Crnic Institute, Dr. Elise Sannar, assistant professor of psychiatry at CHCO, and Dr. Jonathan D. Santoro, director of neuroimmunology and assistant professor of neurology and pediatrics at CHLA and the Keck School of Medicine at the University of Southern California. The Crnic Institute is an affiliate organization of the Global Down Syndrome Foundation (GLOBAL) and the largest center for Down syndrome research in the world.

DSRD is a severe neurological condition with symptoms such as acute loss of speech, inability to perform activities of daily life, catatonia, hallucinations, delusions, depersonalization, insomnia, and aggression. Although rare, adolescents and young adults with Down syndrome seem to be at higher risk for this condition.

Lina Patel, PsyD, associate professor of psychiatry at the University of Colorado School of Medicine, and member of the Crnic Institute research team says, “DSRD is often described as a condition whereby a person withdraws into their own inner world. Many common daily activities are suddenly disrupted, such as going to the bathroom, eating, communicating with others – it all goes away suddenly, and they lose a lot of the skills they’ve gained over the course of their life.”

Eileen Quinn, MD, is an associate professor of pediatrics at the University of Toledo College of Medicine and Life Sciences and manages a Facebook group for families and medical professionals searching for answers about DSRD. She started the group after her own daughter Sara, who has Down syndrome, began showing signs of regression.

“I was terrified, because I could tell what it was, and I knew there were no good answers.”

Before experiencing regression, an evaluation from Sara’s elementary teacher read, ‘Sara has a sparkly personality’ and, ‘many friends who want to spend time with her.’ But, after starting middle school, Sara suddenly became withdrawn, unable to make eye contact, and developed repetitive, ritualistic behaviors among other symptoms.

“To lose her like that, so abruptly and completely… it was just horrible,” says Quinn.

According to Quinn, it has taken years of seeking treatment and trying numerous medications and therapies to see some improvement, but she believes Sara is not as capable as she could be with more effective treatments.

It is stories like Sara’s that inspired this multidisciplinary research team to develop an ambitious study of the causes and potential treatments for DSRD.

Currently, the true cause of DSRD is unknown. Until recently, it was considered a strictly psychiatric condition and was often misdiagnosed as more common conditions such as autism spectrum disorder (ASD) or early-onset Alzheimer’s disease in people with Down syndrome. However, emerging research from members of this team has revealed a possible immune mechanism in some patients.

“A growing body of evidence is pointing to dysregulation of the immune system as a possible mechanism underlying DSRD,” says Dr. Espinosa. “Research at the Crnic Institute has shown that individuals with Down syndrome experience chronic hyper-inflammation throughout their lifetimes and are highly predisposed to develop autoimmune conditions. In many ways, DSRD resembles neurological conditions where the immune system attacks the brain, such as autoimmune encephalitis.”

This new research study will focus on investigating the role of the immune system in DSRD as well as comparing current treatments to find the most effective option. To do this, the team will conduct a research-intensive clinical trial to compare the safety and efficacy of three alternative therapeutic approaches, including two immune-modulatory medicines known as intravenous immunoglobulin (IVIg) and tofacitinib (marketed as Xeljanz), and the psychiatric drug Lorazepam, a benzodiazepine commonly used to treat catatonia and other symptoms of DSRD.

Dr. Santoro, a trained neuroimmunologist and leading expert in the clinical management of DSRD, has seen promising results treating the condition with multiple immuno-modulatory medicines, especially in patients who present diagnostic abnormalities indicative of inflammation affecting the brain.

“We have seen patients with Down syndrome who had not spoken or moved in two or three years start running down the hall and speaking within weeks of receiving some of these treatments,” said Santoro. “However, it is not clear yet which patients will benefit the most from a given therapy.”

“This is an important study that will compare three different promising treatments acting through diverse mechanisms and which could identify biomarkers to match patients to their best therapeutic option,” Dr. Sannar added.

“We are so pleased that GLOBAL’s advocacy work with our self-advocates, Congressional Champions and NIH has led to the establishment of INCLUDE, the trans-NIH Down syndrome research project,” says Michelle Sie Whitten, President & CEO of GLOBAL. “INCLUDE-funded clinical trials specifically for people with Down syndrome, such as the DSRD study, have led to a renaissance in Down syndrome research and care. We are deeply grateful to our scientists, NIH and our amazing Down syndrome community for investing in GLOBAL’s work to elongate life and improve health outcomes.”

To learn more, please email DSResearch@cuanschutz.edu.

About the Linda Crnic Institute for Down Syndrome 

The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 60 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute. 

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 120 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).

Press Contacts

Chelsea Donohoe
chelsea.donohoe@cuanschutz.edu
662-312-8953  

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

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