Down Syndrome In The News
GiGi Gianni gives inspiring speech at United Nations
This World Down Syndrome Day, individuals with Down syndrome are not just part of the conversation; they’re helping lead it.
On Thursday, March 20, GiGi Gianni, the 22-year-old namesake and Chief Inspiration Officer of GiGi’s Playhouse, spoke in front of the United Nations ahead of World Down Syndrome Day. GiGi spoke as part of the Center for Family & Human Rights panel on increasing support systems for individuals with Down syndrome.
GiGi spoke about her life, her journey, and the importance of celebrating all individuals with Down syndrome.
As inspiring as GiGi’s speech was, her message was simple:
Her life matters... in fact, every individual with Down syndrome matters.
Though the world is often quick to place labels on individuals with Down syndrome, GiGi made sure the room knew that she’s not a diagnosis. She’s a daughter, a sibling, an advocate, a singer, an author, a girlfriend, a career woman, and so much more.
In a world that often overlooks the Down syndrome community, GiGi made sure she was heard.
Nancy Gianni, GiGi’s mother and the Chief Belief Officer of GiGi’s Playhouse, also spoke about the incredible work the organization has done, with over 61 locations across the U.S. and Mexico, providing more than 340,000 hours of free educational and therapeutic programming each year.
While she highlighted this crucial work, Nancy also emphasized the ongoing work needed to ensure greater acceptance of individuals with Down syndrome and disabilities.
This echoed the message GiGi shared in her own speech—reminding the world that, while progress has been made, there is still much to do.
For GiGi, the focus remains clear: every life, including hers, matters.
GiGi’s Playhouse Milwaukee holds book signing for participant
We all have a story to tell.
This past weekend, Ravaughn, an adult participant at GiGi’s Playhouse Milwaukee and a budding author, got a chance to celebrate his story with Fox 6 News!
GiGi’s Playhouse Milwaukee held a book signing for Ravaughn’s memoir, ‘I AM HERE!: Living Life to My Fullest Potential... Celebrating Down Syndrome,” and Fox 6 Milwaukee came out to highlight the book signing.
Written by Ravaughn with his mother, Dawn, ‘I AM HERE’ is an inspiring memoir that talks about Ravaughn’s life and his journey embracing his unique potential. It’s a quick, powerful read.
"The book talks about his experiences, his learning experience and life experiences," Dawn told Fox 6 Milwaukee. "The book tells it all."
"I feel great because God has a plan for me, and I got a plan for him, too," Ravaughn said. "I'm so excited for myself."
Ravaughn participates in group and one-on-one programming at GiGi’s Playhouse Milwaukee. In addition to Fox 6 Milwaukee, Tim Boundy, the Board President for GiGi’s National Playhouse, and his wife Kim, a literacy tutor at our National/Hoffman Estates Playhouse went to Ravaughn’s book signing to celebrate him and his memoir.
Ravaughn’s goal is to sell 5,000 copies of his memoir and become a New York Times best seller.
You can purchase Ravaughn’s book here, and you can read Fox 6 Milwaukee’s article about Ravaughn’s book signing here!
GiGi’s Playhouse added to Ohio Department of Health’s Down Syndrome Fact Sheet
Thanks to the hard work of our Ohio Playhouses, all soon-to-be parents in Ohio welcoming a beautiful new baby with Down syndrome will know they can turn to GiGi’s Playhouse for free educational, therapeutic, and career development programs!
Last month, the Ohio Department of Health added GiGi’s Playhouse to the Down Syndrome Fact Sheet for new and expecting parents. Since 2014, this fact sheet has been provided to every family in Ohio who receives a prenatal or postnatal diagnosis of Down syndrome.
Lizz Maxwell, Executive Director of GiGi’s Playhouse Cleveland, and Megan Vance, Site Director of GiGi’s Playhouse Canton, led the initiative to add GiGi’s to the fact sheet with unwavering dedication and strategic vision. From Lizz’s impactful meetings at the state capitol to her tireless follow-up with key representatives from the Ohio Department of Developmental Disabilities and the Ohio Department of Health, their efforts have been instrumental in securing a seat at the table.
The fact sheet is a byproduct of House Bill 552, signed into law by the Ohio General Assembly in 2014. The bill’s goal is to ensure that soon-to-be parents who have just learned of a prenatal diagnosis receive accurate and up-to-date information about Down syndrome from physicians, certified nurse midwives, and genetic counselors.
We extend our deepest gratitude to everyone from our Ohio Playhouses who played a role in advancing this important cause and ensured that families in Ohio will know that they can rely on GiGi’s Playhouse!
Researchers identify genetic cause for hearing loss in children with Down syndrome
For years, we’ve known about the link between Down syndrome and hearing loss — nearly 50 percent of children with Down syndrome have hearing loss caused by inflammation and fluid in the middle ear.
This condition, formally named otitis media with effusion (OME), is commonly referred to as ‘glue ear,’ as the fluid build-up in the ear often becomes thick and sticky, resembling glue.
Though researchers know about the connection between OME and Down syndrome, the genetic basis of the condition has remained unclear.
Until now.
Through studying mice, researchers have identified the Dyrk1a gene as the key driver for why individuals with Down syndrome develop glue ear. Extra copies of the Dyrk1a gene have already been linked to heart defects in individuals with Down syndrome.
It’s believed that this information can help the medical community to develop more targeted therapies to address hearing loss. Currently, children with OME can require regular rounds of surgery to prevent fluid from accumulating in the ear drum. In addition, OME can cause complications and difficulties when children learn to speak.
Most importantly, this research brings the scientific community one step closer to understanding a condition that affects the lives of so many children with Down syndrome.
Read more about this new research around OME here.
New York Governor Signs Down Syndrome Awareness Bill
BREAKING NEWS: The Down syndrome community in the state of New York experienced a HUGE win...and GiGi’s Playhouse played a crucial role.
Last week, the Down Syndrome Awareness Bill was signed into law, requiring the NYS Department of Health to provide doctors with up-to-date information and resources about Down syndrome. The bill’s goal is to ensure that soon-to-be parents who have just learned of a prenatal diagnosis receive accurate information. It seeks to end the rampant misinformation that continues to surround Down syndrome.
Emily Mondschein, Executive Director of GiGi’s Playhouse Buffalo, can speak to that misinformation. Emily had a negative experience with her doctor when she received a prenatal diagnosis when she was pregnant with her son Paul who has Down syndrome.
But Emily’s experience didn’t just make her aware of this misinformation problem; it made her work to solve it.
Emily approached New York Assembly Member Karen McMahon and Senator Robert Ortt about this issue. She then met with the Governor’s team to educate them on it.
But Emily and our Buffalo Playhouse didn’t just act alone; they called on the power and strength of other members of our incredible GiGi’s network to help make this bill a reality. Our Southern Tier, Rochester, and Syracuse Playhouses all played pivotal roles by writing letters to the Governor, highlighting New York’s need for the Down Syndrome Awareness Bill.
This bill not only speaks to the amazing advocacy efforts that are taking place in the Down syndrome community in New York, but also the collective strength of the GiGi’s Playhouse network. Together, our Playhouses are advocating for the Down syndrome community, enacting change, and truly changing the world for the better.
You can learn more about New York’s Down Syndrome Awareness Bill here.
National Institutes of Health Awards $4 Million Grant to Study Alopecia Areata and Atopic Dermatitis in Individuals with Down Syndrome
Change is starting to happen.
Despite being the largest chromosomal disability in the US, Down syndrome is the least funded per person.. but there’s now reason to be optimistic.
The National Institutes of Health awarded a $4 million grant to the Icahn School of Medicine at Mount Sinai to study the long-term safety and efficacy of medicines that treat atopic dermatitis (eczema) and alopecia areata in people with Down syndrome.
These medications have already been approved by the FDA for treatment of eczema and alopecia for adults and adolescents, but they have not yet been studied specifically in people with Down syndrome.
This is a significant announcement for a variety of reasons.
Individuals with Down syndrome often experience an increased risk of developing inflammatory skin diseases like eczema and alopecia. Despite this, individuals with Down Syndrome have not been included in any medical trials of drugs used to treat these diseases.
This points to a larger issue. Individuals with Down syndrome have been shut out and ignored from nearly every medical study, meaning medical care and treatment is seldom aimed at meeting their needs.
Luckily, this medical grant is a step in the right direction and is beginning to give individuals with Down syndrome a seat at the table!
Read more about the significance of this medical grant!
FDA APPROVES NEW ALZHEIMER’S DRUG
There are newfound grounds for optimism in the Down syndrome community.
The U.S. Food and Drug Administration (FDA) just announced they’re approving Kisunla, a new drug developed by Eli Lilly and Company (Lilly). Kisunla has been shown in clinical trials to slow the progression of Alzheimer’s disease.
An anti-amyloid drug, Kisunla is designed to remove brain plaque, and as a result, slow cognitive and functional decline in individuals with early symptomatic Alzheimer’s disease. Kisunla is the third anti-amyloid drug to receive FDA approval in the last three years.
This news is of extreme significance to the Down syndrome community as a staggering 90% of individuals with Down syndrome will develop Alzheimer’s by the young age of 54. Kisunla gaining FDA approval gives the Down syndrome population another treatment option.
As optimistic as this news is, more work is needed.
No one with Down syndrome was included in the clinical trials of Kisunla, nor were they included with the other two anti-amyloid drugs that received FDA approval. Because of this, it’s unclear how safe or effective these drugs may be for people with Down syndrome.
Despite individuals with Down syndrome being particularly vulnerable to Alzheimer’s, they’ve been shut out of every clinical trial, but that’s starting to change. Lilly recently announced at an FDA meeting that they’re planning a clinical trial with the Down syndrome community for a new Alzheimer’s drug.
Read more about Kisunla’s approval and what it means for the Down syndrome community.
Fossil reveals Neanderthals cared for 6-year-old with Down syndrome
Individuals with Down syndrome have been on earth for longer than we’ve even realized.
A recent scientific discovery suggests that a 6-year-old Neanderthal child had Down syndrome. This discovery comes from a new analysis of a fossil of an ear bone found in a cave in Spain.
This is the first known finding to reveal Neanderthals had Down syndrome. Neanderthals are humans' closest relatives and lived approximately 400,000 to 40,000 years ago.
The ear bone was initially excavated in 1989 at Cova Negra, a cave in the province of Valencia. The bone was mixed in with animal remains and wasn’t identified until recently – scientists found that the ear bone had abnormalities consistent with Down syndrome.
According to researchers, this finding is extremely significant from an anthropological perspective because it suggests Neanderthals acted altruistically and cared for one another, as multiple group members would have likely assisted the mother in caring for the 6-year-old child.
Read more about this scientific discovery here.
Down Syndrome Population Gains Access to Clinical Trial of New Alzheimer’s Drug
It finally happened.
For years, we’ve known about the ALARMING link between Alzheimer’s and Down syndrome – a staggering 90% of individuals with DS will develop Alzheimer’s by the young age of 54 -- it’s the No. 1 killer of people with DS.
Despite these dire statistics, individuals with DS have been shut out and excluded from every Alzheimer’s study.
…Until now.
Eli Lilly and Company (Lilly) just announced that people with Alzheimer’s are invited to participate in a clinical trial for a new Alzheimer’s drug, donanemab. Up to this point, donanemab has only been tested in trials in neurotypical people with Alzheimer’s, but that is finally changing.
This is a HUGE WIN! Down syndrome is the largest chromosomal disability in our country and yet, it’s the least funded! But we’re working to change that.
Though more work still needs to be done, this announcement from Lilly goes a long way. Individuals with Down syndrome are finally getting a seat at the table!
To read more about this breakthrough in the DS community click here.