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,…
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.…
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 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…
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…
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…
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…
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 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…
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.…
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,…
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…
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).…
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…
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…
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…
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…
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…
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…
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 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…
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 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…
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…
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,…
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…
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…
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…
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…
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…
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.…
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…
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 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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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.…