2025: A Year of Milestones in DS-AD
The medical advances made within the Down syndrome community over the past few decades have been nothing short of amazing. The life span of individuals with Down syndrome has more…
Your Support Matters – A look at LuMind IDSC’s 2024 impact
Your Support Matters – A look at LuMind IDSC’s 2024 impact
Over the past year, LuMind IDSC continued to make progress on our initiatives in research, policy advocacy, and connecting with the Down syndrome community. Our continued success throughout 2024 has…
A Season of Gratitude: Why My Family Supports LuMind IDSC
A Season of Gratitude: Why My Family Supports LuMind IDSC
Thirty years ago, our family plans changed when our first child, Gwendolyn, was born with Down syndrome. Over time, we realized life would be different, but just as rewarding –…
Angie Del Gaudio Awarded Collin Lis Humanitarian Award
Angie Del Gaudio Awarded Collin Lis Humanitarian Award
Angie Del Gaudio from Long Beach, CA has been selected as the 2024 Collin Lis Humanitarian Award winner. Del Gaudio created the “Rams Without Limits” after-school dance program for neurodiverse…
RAND report shows benefit of investment in future health outcomes for adults with Down syndrome
RAND report shows benefit of investment in future health outcomes for adults with Down syndrome
10/1/2024 | For immediate release | Contact: Kate O'Neill ([email protected]) Investment in Alzheimer’s Research Today Will Yield Health Benefits for the Next Generation of Adults With Down Syndrome, New Report…
His Amazing Self: a brother’s reflection on Down syndrome-associated Alzheimer’s Disease
His Amazing Self: a brother’s reflection on Down syndrome-associated Alzheimer’s Disease
My brother, Rohan, was born 38 years ago in the city of Bangalore in India. He was born with Down syndrome. When he was three years old, my parents made…
Pathways to Parity Program Approved for $250K PCORI Engagement Award
Pathways to Parity Program Approved for $250K PCORI Engagement Award
Project will empower advocates, enhance research for people at high risk of Alzheimer’s disease who have Down syndrome Washington, D.C. (Aug. 13, 2024) – The Alliance for Aging Research and…
Updates from AAIC: Down syndrome community boosted by FDA confirmation of label and new anti-amyloid clinical trial
Updates from AAIC: Down syndrome community boosted by FDA confirmation of label and new anti-amyloid clinical trial
Information revealed at the 2024 AAIC conference on the ACTC-DS-led study in DS-associated Alzheimer's disease with Lilly’s anti-amyloid drug Kisunla. At the 2024 Alzheimer’s Association International Conference in Philadelphia this…
LuMind IDSC Presents the Collin Lis Humanitarian Award to Two Employees
LuMind IDSC Presents the Collin Lis Humanitarian Award to Two Employees
In honor of Collin Lis, a kind and loving 11-year-old boy with Down syndrome, LuMind IDSC is presenting the Collin Lis Humanitarian Award to two members of the Down syndrome…
FDA issues approval for new Alzheimer’s drug Kisunla; Down syndrome community is optimistic
FDA issues approval for new Alzheimer’s drug Kisunla; Down syndrome community is optimistic
FDA issues approval for Kisunla, new Alzheimer's drug; Down syndrome community optimistic On Tuesday, July 2, the U.S. Food and Drug Administration (FDA) announced the approval of Kisunla (donanemab), an…
Navigating the Road to Graduation for Students with Disabilities
Navigating the Road to Graduation for Students with Disabilities
Graduation from high school is a major accomplishment in the journey we each experience through life. According to the U.S. Department of Education’s National Center for Education Statistics, the overall…
Down syndrome population will see a clinical trial of new Alzheimer’s drug
Down syndrome population will see a clinical trial of new Alzheimer’s drug
Major pharmaceutical company announces Down syndrome population will see a clinical trial of new Alzheimer’s drug People with Down syndrome will be invited to participate in a clinical trial of…
Clinical Trials Day: A Historic Review of the First Clinical Trial
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…
An Everyday Hero in Mom: Navigating Down Syndrome Regression Disorder
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…
Down syndrome collaborators now published in Alzheimer’s and Dementia
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…
LuMind IDSC statement on FDA Advisory Committee for promising Alzheimer’s drug, donanemab
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,…
Study: Medicare, Medicaid, and Dual Enrollment for Adults with Intellectual and Developmental Disabilities.
Study: Medicare, Medicaid, and Dual Enrollment for Adults with Intellectual and Developmental Disabilities.
Medicare, Medicaid and Dual Enrollment for Adults with IDD Boston University School of Public Health recently published an article in Health Services Research Journal entitled Medicare, Medicaid, and Dual Enrollment…
Message from the CEO: a look ahead to 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…
Progress in 2023 – our annual impact report
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…
Reuters Article: Barriers to Latest Alzheimer’s Treatments for Down Syndrome Community
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.…
LuMind IDSC names new Director of Community Programs
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…
Boston Globe OpEd People with Down Syndrome Now Left Out of Treatment
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…
Study: Use of Medicaid by Adults with Down Syndrome
Study: Use of Medicaid by Adults with Down Syndrome
Medicaid Enrollment and Service Use Among Adults with Down Syndrome September 16, 2023 In a recently published study in the Journal of American Medical Association (JAMA) Health Studies it was…
Key updates on Down syndrome community access to new Alzheimer’s drugs
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…
LuMind IDSC statement on FDA approval of Leqembi
LuMind IDSC statement on FDA approval of Leqembi
LuMind IDSC issues statement following FDA full approval of Leqembi™ to treat early-stage Alzheimer’s disease July 7, 2023 In a groundbreaking decision that signals new hope for people with Alzheimer’s…
Meet the Black Down Syndrome Association
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…
Expert panel addresses inequitable access to Alzheimer’s drugs for adults with Down syndrome
Expert panel addresses inequitable access to Alzheimer’s drugs for adults with Down syndrome
Seeking to rectify existing federal and state policies which prevent people with intellectual disabilities from accessing new therapies for Alzheimer’s disease, a group of international experts are calling for modification…
LuMind IDSC joins Advocacy Day on Capitol Hill
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…
LuMind IDSC Statement re: Donanemab Phase 3 Results
LuMind IDSC Statement re: Donanemab Phase 3 Results
Pharmaceutical company Eli Lilly today announced results of a phase III clinical trial that proves their anti-amyloid drug, donanemab, significantly slowed cognitive and functional decline in people with early symptomatic…
Important progress in the treatment of sleep apnea and Down syndrome
Important progress in the treatment of sleep apnea and Down syndrome
At the end of March, the US Food & Drug Administration approved Inspire’s Hypoglossal Nerve Stimulator for children with Down Syndrome and significant sleep apnea who are 13 years and…
Hope and Action for Down syndrome Alzheimer’s research on WDSD 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…
An athlete’s heart and a charmer’s smile: meet Armond Maillard
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…
Beyond Down Syndrome: The Friedman family turns experience into guidance
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…
Fierce Biotech article highlights dearth of inclusion in Alzheimer’s research
Fierce Biotech article highlights dearth of inclusion in Alzheimer’s research
"Alzheimer's meds are here. But for the Down syndrome community, it's still the 1980s" by Annalee Armstrong, Fierce Biotech An important article from industry publication Fierce Biotech highlights the lack…
With support from Lilly, LuMind IDSC launches key research and awareness activities to advance Down syndrome research
With support from Lilly, LuMind IDSC launches key research and awareness activities to advance Down syndrome research
2/22/2023 (Burlington, MA) – Today the LuMind IDSC Foundation, a leading national Down syndrome research organization, announced a new collaboration with Eli Lilly and Company (Lilly) aimed at accelerating research…
Results from “Challenges of Caregiving” Survey Published in Research Journal
Results from “Challenges of Caregiving” Survey Published in Research Journal
The LuMind IDSC community and caregivers across the U.S. participated in “Challenges of Caregiving,” an online survey of caregiver perspectives on a range of topics that are important to the…
New Year Greetings from Hampus Hillerstrom
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,…
Statement on accelerated approval of Leqembi to treat mild-stage Alzheimer’s disease in the general population
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.…
Impact Report 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…
New steps forward in treating Alzheimer’s disease with lecanemab: Clinical trial reveals clear efficacy in removing brain plaque
New steps forward in treating Alzheimer’s disease with lecanemab: Clinical trial reveals clear efficacy in removing brain plaque
At an Alzheimer’s disease research conference last week, new clinical trial data was presented for an antibody drug candidate called lecanemab. (Read more about the development of lecanemab here.) An…
DS-CTN Data and Safety Monitoring Board (DSMB)
DS-CTN Data and Safety Monitoring Board (DSMB)
LuMind IDSC and the Down Syndrome Clinical Trials Network are pleased to announce the launch of the DS-CTN Data and Safety Monitoring Board (DSMB). This service was created to provide…
Lecanemab: New Treatment for Alzheimer’s Disease
Lecanemab: New Treatment for Alzheimer’s Disease
Eisai, a Japanese pharmaceutical company, and its partner Biogen, a Massachusetts-based biotechnology company, recently announced positive “topline” results from the clinical trial of their anti-amyloid antibody, lecanemab, in patients with…
NTG Publishes Advisory on Long-COVID in Adults with Intellectual Disability
NTG Publishes Advisory on Long-COVID in Adults with Intellectual Disability
In a recent report, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) published an article providing background information on the residual and potentially long-term effects of Long-COVID,…
Random Acts of Kindness During Down Syndrome Awareness Month
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…
Why is Down syndrome research important?
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
Potential New Therapy for Adults with Down Syndrome
Potential New Therapy for Adults with Down Syndrome
September 16, 2022 Research recently published in the journal Science (Manfredi-Lozano et al., Science 377, eabq4515 (2022)) raises the possibility that a currently approved drug may offer an effective boost…
LIFE-DSR: up close and personal with John
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…
Going The Distance: What My Dad Taught Me About Perseverance, By Karen Gaffney
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
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 and Down Syndrome
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…
Six Books Written by People with Down Syndrome
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…
A Closer Look at the CMS Decision on Aduhelm and Anti-Amyloid Drugs
A Closer Look at the CMS Decision on Aduhelm and Anti-Amyloid Drugs
AN EXPLAINER FOR THE DOWN SYNDROME COMMUNITY April 15, 2022 BACKGROUND On April 7, 2022, the federal Centers for Medicare and Medicaid (CMS) finalized their coverage policy for drugs known as…
The Washington Post Publishes Article to Bring Awareness of DS Related Alzheimer’s Disease
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.…
Chronic Sleep Conditions and Down Syndrome
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,…
The Sweet Labor of Love
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…
Caregivers Evaluate Independence in Individuals with Down Syndrome
Caregivers Evaluate Independence in Individuals with Down Syndrome
Institutions: Division of Medical Genetics and Metabolism at Massachusetts General Hospital, LuMind IDSC Foundation, the Department of Pediatrics, Harvard Medical School, Cincinnati Children's Research Foundation and the Division of Physical Medicine…
Report of the Neuroatypical Conditions Expert Consultative Panel
Report of the Neuroatypical Conditions Expert Consultative Panel
EXAMINING ADULTS WITH NEUROATYPICAL CONDITIONS FOR MCI/DEMENTIA DURING COGNITIVE IMPAIRMENT ASSESSMENTS: REPORT OF THE NEUROATYPICAL CONDITIONS EXPERT CONSULTATIVE PANEL July, 2022 Project Principals: Matthew P. Janicki, PhD, Jim Hendrix, PhD, Philip…
Understanding Congenital Heart Defects in Individuals with Down Syndrome
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
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
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
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…
Results from T21RS’s COVID-19 International Survey on Vaccination of Individuals with DS
Results from T21RS’s COVID-19 International Survey on Vaccination of Individuals with DS
January 26, 2022 In a study funded by the LuMind IDSC Foundation, the T21RS COVID-19 Initiative launched an international survey to obtain information on the safety and efficacy of COVID-19 vaccines for individuals…
Five Recent Down Syndrome Research Data Articles to Stay Up to Date
Five Recent Down Syndrome Research Data Articles to Stay Up to Date
January 25, 2022 Recently, two institutions in the Down Syndrome Clinical Trials Network (DS-CTN) published five studies about Down syndrome-related health and wellness, ranging from infectious diseases to mental health, skills, and…
Publication Illustrates Need for Therapies to Address Immune Aging in Down Syndrome
Publication Illustrates Need for Therapies to Address Immune Aging in Down Syndrome
Impaired immune function is a clear and growing threat to the health and well-being of people with Down syndrome (DS). Understanding how and why the immune system is altered in…
LuMind IDSC Statement on CMS Proposed Coverage for Anti-Amyloid AD Drugs
LuMind IDSC Statement on CMS Proposed Coverage for Anti-Amyloid AD Drugs
January 12, 2022 During the past year, LuMind IDSC remained cautiously optimistic about treatment possibilities that the development of new drugs for Alzheimer’s disease may bring to the Down syndrome community.…
LuMind IDSC Impact Report 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…
Tips for Promoting Dietary Changes in Individuals with Down Syndrome
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
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…
My Family Is My Pride
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 Its Connection to Down Syndrome
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…
LuMind IDSC, NDSS and NTG Urge the Advisory Council to Take Action on the Needs of the DS Community
LuMind IDSC, NDSS and NTG Urge the Advisory Council to Take Action on the Needs of the DS Community
October 20, 2021 LuMind IDSC, the National Down Syndrome Society (NDSS), and the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) recently submitted a formal letter to the…
Hampus Hillerstrom, LuMind IDSC’s CEO Publishes Article in Exceptional Parent Magazine
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…
LuMind IDSC and Dr. Nicole White Publish: Parental Perspectives on Research for Down Syndrome
LuMind IDSC and Dr. Nicole White Publish: Parental Perspectives on Research for Down Syndrome
October 18, 2021 Dr. Nicole White, Hampus Hillerstrom, LuMind IDSC and a team of experts, recently published an article in the Journal of Applied Research in Intellectual Disabilities, that delves into…
LuMind IDSC and Team of Experts Publish Article on Aging with DS and the Future of Research
LuMind IDSC and Team of Experts Publish Article on Aging with DS and the Future of Research
Dr. James Hendrix, LuMind IDSC's Chief Scientific Officer, along with a team of Down syndrome experts recently published an article in the Journal of Clinical Medicine, as part of the special issue…
Expert Chat: A Conversation with Dr. Nicole White
Expert Chat: A Conversation with Dr. Nicole White
October 7, 2021 From mom of four to Down syndrome researcher. Research Spotlight sat with Nicole White and discussed some of the challenges that prevent parents and caregivers from getting…
Michelle Sullivan: Mother, Fundraiser, and Ironwoman
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…
LuMind IDSC and Other National Groups Urge CMS to Include DS Community in Alzheimer’s Drugs Coverage
LuMind IDSC and Other National Groups Urge CMS to Include DS Community in Alzheimer’s Drugs Coverage
August 18, 2021 LuMind IDSC has joined the National Down Syndrome Society (NDSS) and The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in sending comments to federal…
Parents of Children with Down Syndrome Share Their Back-to-School Tips
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
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,…
The Crafts of Love
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…
A New Perspective on The Aduhelm Controversy
A New Perspective on The Aduhelm Controversy
People with Down syndrome live longer and more independently now than ever before. Supported by advances in medical care, community programs, and supportive caregiving, people with Down syndrome are leveraging…
LuMind IDSC signs on to NTG statement re: Aduhelm
LuMind IDSC signs on to NTG statement re: Aduhelm
“It is unknown to what degree aducanumab (Aduhelm) may help people with Down syndrome, as they were not included among the trial participants...” As the conversation around Biogen’s Aduhelm continues,…
Transitioning Into Adulthood: What to Do When Your Loved One With Down Syndrome Becomes An Adult
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…
Why Patient Voices Are So Critical to the Development and Initial Approval of New Drugs
Why Patient Voices Are So Critical to the Development and Initial Approval of New Drugs
June 29, 2021 This blogpost from a former FDA insider on the power of the patient helps us understand how drug approval processes are informed by the patient experience, and…
Ten Useful Tips to Safely Enjoy the Water with Your Loved One with Down Syndrome
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…
Concerned About Alzheimer’s Disease? Signs That Your Loved One Should Have a Healthcare Evaluation
Concerned About Alzheimer’s Disease? Signs That Your Loved One Should Have a Healthcare Evaluation
June 17, 2021
When a Father Becomes a Superhero
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…
FDA Approves Biogen’s Aduhelm, the First New Drug for Alzheimer’s Disease Since 2003
FDA Approves Biogen’s Aduhelm, the First New Drug for Alzheimer’s Disease Since 2003
Burlington, MA, June 7, 2021 - Today marks an important milestone in Alzheimer’s disease research with the approval by the FDA of Aduhelm (aducanumab) from the company Biogen. Aduhelm is the…
Family Voices for T21RS Virtual Conference
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…
6 Tips to Make Physical Activities Fun for Individuals with Down Syndrome
6 Tips to Make Physical Activities Fun for Individuals with Down Syndrome
May 13, 2021
Cross-Sectional Exploration of Plasma Biomarkers of Alzheimer’s Disease in Down Syndrome: Early Data from the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR) Study
Cross-Sectional Exploration of Plasma Biomarkers of Alzheimer’s Disease in Down Syndrome: Early Data from the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR) Study
May 13, 2021 LuMind IDSC’s Chief Scientific Officer, James Hendrix, and a team of dedicated researchers and clinicians have published a key manuscript from the Down Syndrome Clinical Trial Network…
Getting to Know the Expert Behind “Ask Dr. Chicoine”
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.…
Little Did I Know
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…
LuMind IDSC Supported the T21RS COVID-19 Initiative’s International Survey on Patients with COVID-19 and Down Syndrome
LuMind IDSC Supported the T21RS COVID-19 Initiative’s International Survey on Patients with COVID-19 and Down Syndrome
May 3, 2021 LuMind IDSC supported the T21RS COVID-19 Initiative that brought about the original survey and the resulting analysis, which was recently published in The Lancet's EClinical Medicine Journal. We…
Growing Up and Moving Out with Down Syndrome – How A Group of Families Created Independent Living Opportunities in Austin, Texas
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
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
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…
Findings Released for Ongoing Study of Clinical Trial Participation by the Down Syndrome Community
Findings Released for Ongoing Study of Clinical Trial Participation by the Down Syndrome Community
March 9, 2021 (Burlington, MA): LuMind IDSC Foundation, the National Down Syndrome Society (NDSS), and pharmaceutical leader Eli Lilly and Company (Lilly) recently released findings of a study that identifies…
LuMind IDSC is Excited About a New Publication in the Journal of Patient-Reported Outcomes
LuMind IDSC is Excited About a New Publication in the Journal of Patient-Reported Outcomes
As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer’s disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of…
LuMind IDSC Acknowledged by T21RS For Work on COVID-19 Survey
LuMind IDSC Acknowledged by T21RS For Work on COVID-19 Survey
LuMind IDSC Foundation President/CEO Hampus Hillerstrom and Chief Scientific Officer James Hendrix acknowledged for their efforts on the T21RS COVID-19 survey. Here is an excerpt from the T21RS Newsletter: Meanwhile,…
