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James Lind PortraitResearch SpotlightCommunity Spotlight
May 17, 2024

Clinical Trials Day: A Historic Review of the First Clinical Trial

James Lind, a United Kingdom's Royal Navy surgeon, is considered the “Father of Clinical Trials.” Each year, on May 20, we celebrate Clinical Trials Day and Lind's contribution to the…
CristinaandAveryCommunity Spotlight
May 8, 2024

An Everyday Hero in Mom: Navigating Down Syndrome Regression Disorder

There is a quote from author Lance Conrad that states, “I can imagine no heroism greater than motherhood.” For Cristina Rothfuss, a mother of four, navigating a rare condition to…
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March 15, 2024

Down syndrome collaborators now published in Alzheimer’s and Dementia

“Adapting prescribing criteria for amyloid‐targeted antibodies for adults with Down syndrome” published in the journal of the Alzheimer’s Association Drawing attention to policies currently preventing people with intellectual disabilities from…
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March 8, 2024

LuMind IDSC statement on FDA Advisory Committee for promising Alzheimer’s drug, donanemab

LuMind IDSC is encouraged by today’s news that the U.S. Food and Drug Administration (FDA) is requesting more time and information before making a decision on the status of donanemab,…
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January 18, 2024

Message from the CEO: a look ahead to 2024

“I want to enjoy my life for a long time. I want to grow old just like everyone else.”    These two sentences, spoken by a 37-year old man with Down…
Final Impact Report 2023 imageCommunity Spotlight
December 21, 2023

Progress in 2023 – our annual impact report

Thanks to the extraordinary support and engagement of the Down syndrome community, LuMind IDSC is celebrating a year of outstanding progress. In accelerating research, expanding connections, raising voices, and influencing…
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November 14, 2023

Reuters Article: Barriers to Latest Alzheimer’s Treatments for Down Syndrome Community

Hampus Hillerstrom, CEO of LuMind IDSC Foundation and father to a child with Down syndrome, knows about the barriers people with Down syndrome face in accessing the latest Alzheimer's treatments.…
statement headerCommunity Spotlight
September 21, 2023

LuMind IDSC names new Director of Community Programs

Following a five-month, national search, LuMind IDSC Down Syndrome Foundation announced the appointment of Christina Reaves as the new Director of Community Programs. In the newly revised role, Christina will…
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September 18, 2023

Boston Globe OpEd People with Down Syndrome Now Left Out of Treatment

LuMind IDSC and The Arc of Northeast collaborated on an OpEd that was recently published in The Boston Globe. Authors Hampus Hillerstrom and Jo Ann Simons are leaders of their…
statement headerCommunity SpotlightResearch News
July 7, 2023

Key updates on Down syndrome community access to new Alzheimer’s drugs

Five takeaways for the Down syndrome community: Updates on accessing the new Alzheimer’s drugsLuMind IDSC is working on many levels to break down the barriers that currently prevent people with…
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July 7, 2023

Meet the Black Down Syndrome Association

by guest contributor, Crystal Lotterberry, co-founder of the Black Down Syndrome Association About the Black Down Syndrome Association The Black Down Syndrome Association is helping to create a more inclusive…
HH in DC Matt CullenCommunity Spotlight
May 12, 2023

LuMind IDSC joins Advocacy Day on Capitol Hill

In April, leaders from LuMind IDSC joined with 350 self-advocates, caregivers, and professionals to meet with federal legislators in a national, unified Day of Advocacy coordinated by the National Down…
Hampus and Oskar reading 2023Research SpotlightCommunity Spotlight
March 21, 2023

Hope and Action for Down syndrome Alzheimer’s research on WDSD 2023

Each year, the Down syndrome community and our supporters – family, friends, businesses, organizations and others – honor our loved ones on World Down Syndrome Day. This year, it feels…
image 6487327Community Spotlight
March 17, 2023

An athlete’s heart and a charmer’s smile: meet Armond Maillard

March 21st is “Down Syndrome Awareness Day,” a day designated by the United Nations to increase global awareness of Down syndrome and to celebrate the accomplishments of the Down syndrome…
Steve and GwendolynCommunity Spotlight
March 15, 2023

Beyond Down Syndrome: The Friedman family turns experience into guidance

Parent, advocate, and published author, Steve Friedman has used his family's recent experiences to help guide others. With The Essential Guide for Families with Down syndrome, Steve brings a practical…
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January 18, 2023

New Year Greetings from Hampus Hillerstrom

Dear Friend of LuMind IDSC, Recently, I spoke with a family whose newborn baby had heart surgery. As many of you who have been through similar experiences can attest to,…
Down syndrome brain and Alzheimer's diseaseResearch SpotlightCommunity Spotlight
January 10, 2023

Statement on accelerated approval of Leqembi to treat mild-stage Alzheimer’s disease in the general population

On Friday, January 6, the U.S. Food & Drug Administration (FDA) granted accelerated approval for lecanemab, an anti-amyloid drug to treat Alzheimer’s disease that was developed by Eisai and Biogen.…
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December 8, 2022

Impact Report 2022

Our Impact Report 2022 highlights our accomplishments as an organization during a remarkable year. 2022 saw Down syndrome research receive unprecedented attention from policymakers, the media, and the pharmaceutical and…
Random Acts of Kindness during Down Syndrome Awareness MonthCommunity Spotlight
October 6, 2022

Random Acts of Kindness During Down Syndrome Awareness Month

Nowadays people with Down syndrome live healthier, longer, and more fulfilling lives than the generations before them. Today, children and adults with Down syndrome enjoy lives that they navigate according…
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October 3, 2022

Why is Down syndrome research important?

Learn more about Down syndrome research Learn more about resources for families Learn more about Alzheimer's disease & Down syndrome
LIFE-DSR Down Syndrome Research Study with John CroninCommunity SpotlightResearch Spotlight
September 7, 2022

LIFE-DSR: up close and personal with John

In July 2022, John Cronin and his parents invited LuMind IDSC to follow their family experience as they participated in their LIFE-DSR study visit. This one-of-a-kind peek into research was…
Karen Thumbnail 637902881181385222 LFoqJNCommunity Spotlight
June 8, 2022

Going The Distance: What My Dad Taught Me About Perseverance, By Karen Gaffney

June 8, 2022| By: Karen Gaffney Perseverance: According to Webster’s dictionary, it means “continued effort to do or achieve something despite difficulties, failure, or opposition."  I learned this from my…
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June 7, 2022

A Conversation with Brian White on his Upcoming Chicago Marathon to Support LuMind IDSC

Running a marathon is one of those super-human feats that most people only get to enjoy from the comfort of a celebrating audience, or a couch. Yet, this incredible test…
Mental health thumbnail 637883066020930673 ZMdLxWCommunity Spotlight
May 16, 2022

Mental Health and Down Syndrome

In May we recognize Mental Health Awareness Month. Many families deal with mental health issues throughout all stages of life, and healthcare providers are paying more attention to the links between…
Books thumbnail 637862258813697804 7z0Xa7Community Spotlight
April 22, 2022

Six Books Written by People with Down Syndrome

Books transport us to different places, and open our eyes to other ideas and points of view. Sometimes they share the lives and experiences of their authors and teach valuable…
Washington Post Down syndromeCommunity Spotlight
April 7, 2022

The Washington Post Publishes Article to Bring Awareness of DS Related Alzheimer’s Disease

On Thursday, April 7, The Washington Post published a thorough, person-centric, and well-written article by reporter Laurie McGinley that we hope will bring renewed awareness of Down syndrome-related Alzheimer's disease.…
Sleep Apnea and Down Syndrome, LuMind IDSC FoundationCommunity SpotlightSleep Apnea
March 22, 2022

Chronic Sleep Conditions and Down Syndrome

Every night, a large percentage of the population with Down syndrome struggle to fall asleep. When they do, they might struggle to achieve healthy and restful sleep. In this blog,…
World Down Syndrome Awareness DayCommunity Spotlight
March 15, 2022

The Sweet Labor of Love

March 15, 2022  Every March, the Down syndrome community honors World Down Syndrome Awareness Day on March 21 (3/21). As part of LuMind IDSC’s “Raise Your Hand” for World Down Syndrome Day initiative, we…
Congenital heart defects in Down syndromeCommunity Spotlight
February 17, 2022

Understanding Congenital Heart Defects in Individuals with Down Syndrome

February is Heart Month, a time to bring awareness to heart conditions. Congenital Heart Defects affect approximately 50% of babies born with Down syndrome, (compared to 1% of neurotypical children).…
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February 8, 2022

Hampus Hillerstrom, LuMind IDSC’s CEO Publishes Article in Exceptional Parent Magazine

RELIABLE DOWN SYNDROME RESOURCES FOR EVERY FAMILY, FOR EVERY STAGE OF LIFE "Down syndrome research is of huge importance to our community. As people with Down syndrome live longer and…
Sleep tips for people with Down syndromeCommunity SpotlightSleep Apnea
February 7, 2022

Eight Tips to Promote Healthy Sleep Habits for People with Down Syndrome

Sometimes falling asleep and having a restful night isn’t as easy as we would hope. In some cases, sleeplessness can be helped by tweaking certain routines and fostering healthy bedtime…
CTA21 637795757952595243 9gVYTjCommunity Spotlight
February 4, 2022

Submit Comments to CMS so People with Down Syndrome Will Have Equal Access to Alzheimer’s Drugs

Cowboy smiling thumbnail 637755939887035990 xXJYZKCommunity Spotlight
December 20, 2021

LuMind IDSC Impact Report 2021

2021 was a year of growth for LuMind IDSC. Thanks to donors like you, we were able to expand our services and educational resources, and were able to hear the…
t people with Down syndrome have a higher risk of obesity and developing Alzheimer’s disease, it’s important to act and promote healthier lifestyles considering preventionCommunity Spotlight
December 10, 2021

Tips for Promoting Dietary Changes in Individuals with Down Syndrome

Having a healthy and well-balanced diet has many benefits. Experts recommend eating healthy foods to prevent chronic diseases. In an earlier blog post, we shared that “Researchers are also learning…
myds thumb22 637725694493553055 1RfPaPCommunity Spotlight
November 15, 2021

Useful Terms to Understand the Science that Will Benefit Our Loved Ones

Have you ever wondered what certain scientific terms or acronyms mean? If you're interested in the scientific advances working towards helping your loved one with Down syndrome live healthier and…
Ojeda girls thumb 637716306571097509 Nz3jaqCommunity Spotlight
November 4, 2021

My Family Is My Pride

November 4, 2021 In January 2018, amidst the celebration of the birth of their baby daughter, Roberto and Nayeli Ojeda received the news that their new baby Mariana, had Down…
Understanding Alzheimer's disease and Down syndromeCommunity Spotlight
October 20, 2021

Understanding Alzheimer’s Disease and Its Connection to Down Syndrome

Today, individuals with Down syndrome enjoy a longer life expectancy and are now able to live into their sixties. Unfortunately, there’s a new challenge that people with Down syndrome and…
Oskar222 637701676944671704 5alp1LCommunity Spotlight
October 18, 2021

Hampus Hillerstrom, LuMind IDSC’s CEO Publishes Article in Exceptional Parent Magazine

October 18, 2021 October is Down Syndrome Awareness Month, and to commemorate it, Hampus Hillerstrom, LuMind IDSC’s CEO, wrote an article for the Exceptional Parent Magazine, a publication that serves the…
Michelle and Britney Sullivan 637666090502654137 keclRVCommunity Spotlight
September 7, 2021

Michelle Sullivan: Mother, Fundraiser, and Ironwoman

September 7, 2021 RUNNING FOR RESEARCH: Good natured and modest, Michelle Sullivan does not consider herself an athlete. Not even with the three marathons and ironman races already under her…
Back to school thumbnail 637647898590336155 VEupX4Community Spotlight
August 17, 2021

Parents of Children with Down Syndrome Share Their Back-to-School Tips

As the summer winds down, we start to notice more stores decking out with fall decorations, and pumpkin flavored everything becomes the harbinger of autumn. Whether we are ready or…
Book collage 637546788419000812 AVDcWECommunity Spotlight
August 9, 2021

10 Books About Down Syndrome Recommended by Experts, Parents, and Caregivers

August 9, 2021 In honor of National Book Lovers Day, the LuMind IDSC community is happy to share a curated list of books recommended by medical experts, caregivers, and Woodbine House,…
Puja 3 thumb 637632348921154913 medeSlCommunity Spotlight
July 30, 2021

The Crafts of Love

July 30, 2021How do you find the time? This is probably a question that Priya and Puja Pandit get all the time. At 15 years old, Priya attends a competitive…
Adult office working thumb 637607518310209701 KwU6PWCommunity Spotlight
July 1, 2021

Transitioning Into Adulthood: What to Do When Your Loved One With Down Syndrome Becomes An Adult

July 1, 2021 Fleeing the nest or staying home? What happens when your loved one with Down syndrome becomes an adult? This is what many parents of children with Down…
Girl on Kayak thumb 637604693066122808 fUxjZECommunity Spotlight
June 28, 2021

Ten Useful Tips to Safely Enjoy the Water with Your Loved One with Down Syndrome

June 28, 2021 As the weather starts to warm up, some of us probably can’t hide our eagerness to jump into a lake or go on a kayaking adventure. According…
AD Thumbnail 637595246892440932 5rchIRCommunity Spotlight
June 17, 2021

Concerned About Alzheimer’s Disease? Signs That Your Loved One Should Have a Healthcare Evaluation

June 17, 2021
Omar Vertical logo sky 637595301885254208 YenCRRCommunity Spotlight
June 17, 2021

When a Father Becomes a Superhero

June 17, 2021 We all think of our dads as superheroes, and today at LuMind IDSC as we celebrate all fathers and father- figures, we could not think of a…
T21 637581587618950676 OzZ4XtCommunity Spotlight
June 1, 2021

Family Voices for T21RS Virtual Conference

June 1, 2021 When Jay Nothnagle was born in 1974, he was diagnosed with Down syndrome. The advice his young parents received from their physician was to “institutionalize him as…
Yoga thumbnail 637565006252054406 cS2tg3Community Spotlight
May 13, 2021

6 Tips to Make Physical Activities Fun for Individuals with Down Syndrome

May 13, 2021
Dr Chicoine Thumbnail 637559047426416126 SObrv8Community Spotlight
May 10, 2021

Getting to Know the Expert Behind “Ask Dr. Chicoine”

May 10, 2021 Have you heard of myDSC’s feature “Ask Dr. Chicoine”? It is a convenient and reliable tool where members can ask an expert health-related questions for people with Down syndrome.…
Burque Thumbnail 637557222140700419 WTHKnlCommunity Spotlight
May 4, 2021

Little Did I Know

May 4, 2021 When the doctor handed me William for the first time and sat down on my hospital bed to tell me she thought William — though he was…
CristinaThumbnail 637544269464352785 kO0SEGCommunity Spotlight
April 14, 2021

Growing Up and Moving Out with Down Syndrome – How A Group of Families Created Independent Living Opportunities in Austin, Texas

April 14, 2021 Ashley Sanchez was among the first to join the online platform myDSC (my Down Syndrome  Community) in September 2020 because, she said, she saw its usefulness right away. For…
Arts and Blues Thumbnail2 637538165685692059 hpenvjCommunity Spotlight
April 12, 2021

Virtual “Night of Art and Blues” Fundraising Event Knocks It Out of the Park

April 12, 2021 For the ninth consecutive year, volunteers in Indiana hosted a successful “A Night of Art and Blues” event in February to support LuMind IDSC. Previously a formal…
Julia and Michael Thumbnail 637532342371738195 nUMhYjCommunity Spotlight
April 5, 2021

Julia Toronczak is Competing in a Half Ironman Triathlon to Raise Funds for Down Syndrome Research

April 5, 2021 Julia Toronczak is very open about why she advocates for Down syndrome research: Everything she does is with her brother’s future and wellbeing in mind and for…
HH Sons Oskar Sebastian Sunhats 637396602838840759 vW5pNsCommunity Spotlight
October 30, 2020

From the CEO: Reflections of Down Syndrome Awareness Month

There is no denying with the COVID-19 pandemic this has been a challenging month for our community to celebrate Down Syndrome Awareness Month as we have in the past. I’ve…
Russell 637387305836593219 J60bujCommunity Spotlight
October 20, 2020

#StrongerTogether – Celebrating Russell

Guest blog post by Adrienne Bievenue I’ve been in the Down syndrome community for 22 years now, thanks to my son, Russell. That’s 23 times I’ve celebrated Down Syndrome Awareness…
WebinarSeries Graphic 637387159852078194 rB8HmjCommunity Spotlight
October 19, 2020

myDSC Webinar – A Day in the Life of MapHabit

Virtual schooling from home is not only challenging for your kids to stay on task, but it also is a burden on family members that are also struggling to operate…
ListenLearn 637284332066360814 62JZ3OCommunity Spotlight
June 5, 2020

Listen and Learn

We have been shocked and saddened by the events over the last week surrounding the tragic and brutal death of George Floyd. These events have resulted in the LuMind IDSC…
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April 2, 2020

Funding Futures Blows Past Million Dollar Fundraising Milestone

For the last 8 years, Margie Doyle and a dedicated committee have been hosting Funding Futures Chicago to raise funds for Down Syndrome research. This year, they had set a…
WatchMeSoarHeader 637289663672574066 cu0R5tCommunity Spotlight
March 19, 2020

3..2..1 is the Key for WDSD!

All over the world, communities are finding ways to show their solidarity and protect the most vulnerable individuals from this unprecedented health challenge that we face with coronavirus. Neighbors check…
Coronoavirus Webpage banner 637289665988420082 DEuTLHCommunity Spotlight
March 14, 2020

COVID 19 and Down Syndrome

Dear Friend, Our society is facing an unprecedented health challenge with the coronavirus COVID-19 pandemic that has now traveled to most countries. Many families are already following the important guidelines…
Coronavirus 637289667820627820 mLdsnjCommunity Spotlight
March 9, 2020

Worried About the Coronavirus and Down Syndrome?

The spreading Coronavirus (also known as COVID-19) has many people worried and concerned for their loved one with Down syndrome. With so much news coverage, it is sometimes difficult to…
iStock1048927120Webinar 637289703636670873Community SpotlightSleep Apnea
February 24, 2020

Treating Sleep Issues To Improve Learning

According to Jamie Edgin, PhD, a researcher who studies sleep disorders and learning in DS, parents need to be aware of sleep problems in their children because, left untreated, they…
LuMindIDSCHalloweenCards760x760 637290341315767025 d47xEgCommunity Spotlight
October 24, 2019


Download and print our Halloween Tips to Remember and Trick-or-Treat cards to use while trick-or-treating! Each PDF file contains ten 2×3 business card-sized cards that you and your child can distribute and use…
JohnCronin 637301707437990652 7EGWdbCommunity Spotlight
January 21, 2019

John’s Crazy Socks Supports LuMind RDS with Alzheimer’s “Forget Me Not” Socks

Giving back is not new to John’s Crazy Socks (JCS), who just announced they are donating $2 from every sale of their Alzheimer’s Awareness Forget Me Not socks to the LuMind RDS…
melanie fillian image 637292786559278879 M4HRitCommunity Spotlight
November 30, 2018

Meet our 2019 Runners

We are very lucky at LuMind RDS that we have a way to help runners participate in ALMOST any race they want.  Our Unique Any Race, Any Place program allows…
10419408 10152796611104920 6580720882287344153 n1 637292163522587392 Ld3bAZCommunity Spotlight
September 5, 2018

LuMind Research Down Syndrome Foundation Gears Up to Host Funding Futures New York

NEW YORK CITY—(September 5, 2018)—The inaugural Funding Futures New York Gala is set to take place on Thursday, September 20 at City Winery in New York City. The event, which…
GlowRun 637292764702714587 Lq9B5BCommunity Spotlight
August 14, 2018

Rockin’ Mom chooses Phoenix, AZ for its third annual Rockin’ It 5K

PHOENIX – (August 14, 2018) – One of the largest retreats for mothers of children with Down syndrome – Rockin’ Mom Retreat – is coming to the JW Marriott Desert Ridge…
b4bimagee1565101141160 637292159172123207 nVuwlrCommunity Spotlight
August 1, 2018

McCordsville mom’s cornhole tournament benefits Down syndrome research

INDIANAPOLIS (July 31, 2018) – McCordsville, Indiana mother and Down syndrome advocate, Mari Kennedy, is helping accelerate breakthroughs in Down syndrome and Alzheimer’s disease research for her son, Ryan, with a…
Margie Doyle 12218 637291233886930414 WIcIuCCommunity Spotlight
January 22, 2018

Welcome to the Team, Margie Doyle.

I am thrilled to join the LuMind RDS staff. As Director of Development and Research Sponsorship, I will lead the expansion of LuMind RDS’ special events and corporate sponsorship initiatives.…