Down Syndrome In The News
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.