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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
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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…
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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…
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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…
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April 22, 2022

Six Books Written by Individuals with Down Syndrome

On April 23rd we celebrate World Book Day. Books transport us to different places, and open our eyes to other ideas and points of view. Sometimes they share the lives…
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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.…
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March 22, 2022

Sleep Apnea 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,…
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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…
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February 17, 2022

Understanding Congenital Heart Defects in Individuals with Down Syndrome

February 17, 2022 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%…
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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…
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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…
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February 4, 2022

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

ACTION NEEDED BY FEBRUARY 9, 2022: SUBMIT COMMENTS TO CMS SO PEOPLE WITH DOWN SYNDROME WILL HAVE EQUAL ACCESS TO ALZHEIMER’S DRUGS People with Down syndrome have a right to…
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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…
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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…
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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…
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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…
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October 20, 2021

Understanding Alzheimer’s Disease and Its Connection to Down Syndrome

October 19, 2021   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…
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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…
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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…
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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…
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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,…
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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…
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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…
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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…
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June 17, 2021

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

June 17, 2021
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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…
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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…
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May 13, 2021

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

May 13, 2021
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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.…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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

Halloween

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…
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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…
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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…
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November 20, 2018

Robby Ketchell and LuMind RDS Runners Take on Marathons

Robby Ketchell, a scientist who helped Nike and a team of runners train to break the 2 hour marathon barrier last May, raced against the clock in the New York…
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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…
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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…
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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.…
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