lejeune-foundation

Rachel Campos-Duffy shares a message for World Down Syndrome Day

Mon, 12 May 2025 14:42:46 GMT

‘Fox & Friends Weekend’ co-host Rachel Campos-Duffy discusses being a parent to a child with Down syndrome with her daughter Valentina

For more information, you can view the original article here: https://www.foxnews.com/video/6349379783112

‘Fox & Friends’ highlights organization researching Down Syndrome

Mon, 12 May 2025 14:10:03 GMT

Jerome Lejeune Foundation president Daniel Schreck joins ‘Fox & Friends Weekend’ to discuss the organization’s work researching Down Syndrome, and to share a personal story about how a diagnosis impacted his family.

For more information, you can view the original article here: https://www.foxnews.com/video/6370742955112

Radio interview with Dan & Tonya Powers

Thu, 08 May 2025 14:59:25 GMT

Raising Awareness About Down Syndrome

March 21st is ‘World Down Syndrome Day’, first established in 2012 in order to raise public awareness of Down syndrome. Down syndrome occurs when someone is born with an extra copy of ‘chromosome 21’ and it is not yet know why this syndrome occurs. As joyful as those with Down syndrome can be, they and their families need support in certain ways that can improve the lives of everyone impacted.

FOX’s Tonya J. Powers speaks with Dan Schreck, President and Chairman Jerome Lejeune Foundation USA, and his son Danny Schreck, who both share the latest advancements in research of the syndrome, improved medical and emotional support resources for families.

For more information, you can view the original article here: https://radio.foxnews.com/2025/03/22/evening-edition-raising-awareness-about-down-syndrome/

Interview with Dan & Tom

Thu, 08 May 2025 14:48:15 GMT

Kids with Down syndrome can live 'abundant lives,' dad tells Fox News contributor

On World Down Syndrome Day, Fox News contributor Tom Shillue speaks to Daniel Schreck, nonprofit leader

Schreck, chairman of the Jérôme Lejeune Foundation and father of a daughter with Down syndrome, says people with the condition are 'the happiest in the world'

Each year on March 21, World Down Syndrome Day (WDSD) marks a global day of awareness and education about the genetic condition.

The goal is to "help people understand and support those with Down syndrome better," according to the initiative's website. WDSD has been officially observed by the United Nations since 2012.

On Friday, Fox News contributor Tom Shillue headed to Times Square in New York City to speak with New Yorkers about their awareness of WDSD.

For more information, you can view the original article here: https://www.foxnews.com/health/kids-down-syndrome-can-live-abundant-lives-dad-tells-fox-news-contributor

3rd International Bioethics Conference

Mon, 05 May 2025 20:15:54 GMT

The splendor of truth
in Science and Bioethics

May 30th - 31st, 2025
Rome - Italy

3rd International Bioethics Conference

International Chair of Bioethics Jérôme Lejeune

https://internationalbioethicscongress.org/

The Jérôme Lejeune Foundation participates in the first ever G7 summit on "Inclusion and Disability" in Italy

Mon, 11 Nov 2024 19:10:28 GMT

November 11, 2024

This inaugural G7 summit dedicated to Inclusion and Disability was held in Umbria, Italy, from October 14-16 and brought together delegations from the EU and G7 as well as NGOs from the world of disability for 3 days. It was a historic opportunity to bring the challenges of caring for people with intellectual disabilities to the forefront of this international summit.

The Jérôme Lejeune Foundation was invited by the Italian Minister of Disability, Alessandra Locatelli, to share its international experience and expertise in the field of intellectual disabilities of genetic origin.

With ECOSOC status at the UN, a formidable presence in 4 countries (France, Argentina, Spain and the United States), and with 4 specialized clinics and a patient base of more than 13,000, JLF’s position stated that the inclusion of people with intellectual disabilities in society is only possible with access to good healthcare. If we do not develop research and medical support aimed at correcting intellectual disabilities and reducing disability, the results of inclusive policies will remain limited.

To meet this challenge, Grégoire François-Dainville, CEO of the Jérôme Lejeune Foundation, has made two strong and innovative proposals. First, make access to health care for people with intellectual disabilities a public health priority, by encouraging States to fund specialized medical clinics. Secondly, since artificial intelligence is the great challenge facing our century, he proposes to invent a mechanism that would make it possible to devote a part of the turnover of companies in the field of AI to funding research on intellectual disabilities, for the direct benefit of the vulnerable population. He also emphasized the importance of a "humanized diagnosis" of trisomy 21, providing for objective support and information for families in order to promote free and voluntary consent to accept the disabled. Finally, he explained the need to make the "life project" of people with disabilities the "keystone" of disability policies. As JLF’s motto states; Care, Research and Advocacy.

Since its creation in 1995, the Jérôme Lejeune Foundation has been shining internationally through its three missions:

CARE; by developing specialized medical clinics. With more than 13,000 patients served since its creation, its Paris clinic is the largest in the world for intellectual disabilities of genetic origin, including trisomy 21. Two other clinics have been created: in Córdoba, Argentina in 2021 and in Madrid, Spain, in 2022.
RESEARCH; by conducting and funding research projects with therapeutic aims, from all over the world, to try to diminish intellectual disability.
ADVOCACY; the defense of people with intellectual disabilities in the face of discrimination against them, in particular through its action with international bodies such as the UN and the European Commission. In 2020, the Foundation was officially recognized by the UN and obtained the official status of ECOSOC.

For more information, please contact us at info@lejeunefoundation.org

International Congress of Bioethics

Mon, 07 Oct 2024 15:18:40 GMT

2024 Congress in Rome

Two days of pro found insight and inspiration at the 2024 International Congress of Bioethics - Access to talks and speakers if you click the picture above.

Exciting news in research from our parent foundation in France!

Tue, 17 Sep 2024 22:28:32 GMT

Respire21 study shows significant effects in neurocognitive development if sleep apnea is treated early

Press release - September 17, 2024

Study shows for the first time that it is possible to improve the neurocognitive development of children with Down syndrome

The clinical research was conducted by the Jérôme Lejeune Institute, the medical, research and training center of the Jérôme Lejeune Foundation, the parent foundation of the Jérôme Lejeune Foundation USA, in collaboration with the Necker-Enfants Malades Hospital, in Paris.

The Jérôme Lejeune Foundation USA is pleased to announce that the results of the Respire 21 clinical study, conducted since 2017 by the Jérôme Lejeune Institute and the Necker-Enfants Malades Hospital, based in Paris, have been published in the Lancet Regional Health – Europe . This study demonstrates that a very early diagnosis of Obstructive Sleep Apnea Syndrome (OSA) and its treatment, if necessary, improve the neurocognitive and behavioral development of young children with Down syndrome.

The study involves a group of 40 children with Down syndrome, who benefited from early and systematic detection of OSA via an initial sleep exploration, by home polysomnography every 6 months (5 in total), from the age of 6 months to 3 years. This sample was compared to a control group of 40 other children with Down syndrome who had a single polysomnography at the age of 36 months, in accordance with the international recommendations currently in force.

The results confirm the prevalence of 97% of OSA in patients aged 6 months, of which 54% of cases are of moderate or severe intensity. With treatment, OSA severity is significantly reduced, resulting in statistically significant improvements in sleep quality and architecture, as well as neurocognitive and behavioral development in these children, compared to the control group. The conclusions of this study are very encouraging for the improvement of the quality of life of people with Down syndrome.

For Clotilde Mircher, geneticist and head of the consultation department at the Jérôme Lejeune Institute, the results are in favour of a real benefit on the neurocognitive development of children, "children who are screened and, if necessary, treated have a Developmental Quotient that is 4 points higher than children who are not screened, who have usual follow-up. Although this difference is statistically significant, the question of its clinical impact still remains open. Guillaume Duriez, Director General of the Jérôme Lejeune Institute, points out: "These are very encouraging prospects for all families because, thanks to them, children with Down syndrome could access a better quality of life. ".

These results should help to adjust the international recommendations which, for children with Down syndrome, currently recommend screening for sleep apnea between the ages of 3 and 4. "We need to change practices: screening should start earlier, before the age of 1," explains Professor Brigitte Fauroux, scientific leader of the study and head of the Functional Unit for Non-Invasive Ventilation and Child Sleep at Necker Hospital.

The study was entirely funded by the Jérôme Lejeune Foundation, the parent foundation of the Jérôme Lejeune Foundation USA, thanks to its French donors, to the tune of €831,000. It was also possible to achieve it thanks to the participation of patients.

It validates the research strategy of the Jérôme Lejeune Foundation, inspired by the intuition of Prof. Jérôme Lejeune, according to which it is possible to improve the cognition of people with Down syndrome.

It also illustrates the value of collaborative research.

Finally, this success confirms the relevance of the Jérôme Lejeune Foundation's care centre model: the fundamental link between care and research; and the importance of preventive medicine, where specialized, comprehensive and personalized medical care and regular follow-up are essential to detect and treat crossover disabilities such as OSA.

About the Jérôme Lejeune Foundation

The Jérôme Lejeune Foundation is the world's leading private funder of research on
trisomy 21 (Down syndrome). Recognized as a public utility since 1996, it acts for people with Down syndrome or another intellectual disability of genetic origin through its three missions: research, care and advocacy. In 30 years, it has supported more than 900 research projects in 24 countries, for a total amount of 75 million euros. It is present in France, where its headquarters are located, in Spain, Argentina and the United States.

The Jérôme Lejeune Institute, based in Paris, is the care, research and training center specializing in intellectual disabilities of genetic origin, including Down syndrome, of the Jérôme Lejeune Foundation, and European leader in this field. Thanks to a multidisciplinary team, it has provided medical follow-up to nearly 13,000 patients throughout their lives since its creation. 4,500 patients are being cared for in 2024 alone. A pioneer in Down syndrome research, the Foundation is involved in some fifteen programs, including several therapeutic studies, as a sponsor or research center.

About the Non-Invasive Ventilation and Child Sleep Unit at the Necker Children's Hospital

The Necker-Enfants Malades Hospital, and more specifically the Non-Invasive Ventilation and Sleep Unit for Children, directed by Professor Brigitte Fauroux, is a nationally and internationally recognized center of excellence for sleep-disordered breathing in children and their treatment, particularly in children with genetic diseases and/or rare diseases.

PRESS CONTACTS

Jérôme Lejeune Foundation US

Denise Shillue

dshillue@lejeunefoundation.org

1+917-359-8484

Jérôme Lejeune Institute France

Hervé Walti

herve.walti@institutlejeune.org

1+418-265-8945

Recent remarks from the International Bioethics Conference

Fri, 24 May 2024 16:34:26 GMT

In this essay by George Weigel, you can read about these "courageous men of faith and reason who knew that the truth sets us free in the deepest meaning of freedom."

From Catholic World Report, May 18, 2024

https://www.catholicworldreport.com/2024/05/18/st-john-paul-ii-and-jerome-lejeune-two-lives-at-the-service-of-life/

Petition, lawmakers call for 'purple alert system' after missing teen with Down syndrome found safe

Thu, 18 Jan 2024 17:44:30 GMT

PITTSBURGH —

An online petition is calling for state lawmakers to implement a “purple alert” system after a 17-year-old girl with Down syndrome went missing in downtown Pittsburgh over the weekend.

Kayla Durler was found safely on Saturday by community volunteers, but those who were a part of the search say a “purple alert” system specifically designed to help find children and adults with intellectual disabilities would have made a difference.

https://www.wtae.com/article/purple-alert-system-petition-pennsylvania/46333995

Spain elects first parliamentarian with Down Syndrome

Mon, 15 Jan 2024 19:41:14 GMT

Mar Galcerán makes history as Spain’s first parliamentarian with Down Syndrome

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Adults with IDD face significant medical biases

Tue, 02 Jan 2024 21:07:26 GMT

Adults with IDD face significant hurdles at the doctor, study finds

As reported by disabilityscoop.com

"People with intellectual and developmental disabilities are more likely than others to say that physicians don’t listen to them, spend enough time with them or offer advice that’s easy to understand.

In a new study , researchers examined the experiences of more than 22,000 adults across the nation...

They found that those with cognitive disabilities including intellectual and developmental disabilities were significantly less satisfied overall with their health care services and had worse experiences with providers..."

Congratulations Kayleigh Williamson!

Tue, 02 Jan 2024 20:45:36 GMT

Woman with Down Syndrome completes NYC Marathon

"On 5 November, the 53rd running of the New York City Marathon commenced when more than 50,000 people raced from Staten Island towards the finish line in Central Park, 26.2 miles away. Among the racers was Special Olympics Texas runner Kayleigh Williamson who made history as one of the first women with Down Syndrome to complete the NYC Marathon."

Read the full story here

t21 Learning

Fri, 10 Nov 2023 20:10:48 GMT

Lejeune Foundation in France launches T21 Learning and Resource Site

Our French sister foundation, and their groundbreaking medical clinic, released a helpful resource site for patients, parents, and professionals.

John Paul Von Arx Releases New Music Video for Original Song, "He's Different”

Thu, 05 Oct 2023 15:10:51 GMT

Country artist and worship leader releases music video about brother with Down Syndrome to spread a pro-life message of hope.

John Paul Von Arx released the official music video for his original song "He's Different" on October 1, 2023. “He’s Different” is about John Paul’s youngest brother, Sam, who has Down Syndrome, and tells the story of how Sam is different than he is in all the best ways – in how he sees life with joy and simplicity and loves people unconditionally.

With both this song and the music video, John Paul wants to “bring hope to parents expecting a baby with Down Syndrome and express [his] solidarity with families of people with special needs. Far too often, there is a stigma surrounding people with special needs and [he wants] to combat and eliminate it and show their dignity to the world.”

Watch the “He’s Different” Official Music Video

John Paul chose to release the music video in October to coincide with both Down Syndrome Awareness Month and Respect Life Month.

“My brother Sam is the most peaceful and free person I know. I am thankful that he is different from me and am so grateful that I get to share his story. And … in doing so, I hope to share other families’ stories of having loved ones with special needs.”

John Paul hopes the message of this music video will spread person-to-person. Please help him spread this pro-life message of hope by sharing the video with anyone you think it will bless.

John Paul Von Arx is a country artist and worship leader who currently lives in Steubenville, OH, with his wife, Sarah, and their daughter, Miriam. He commits to recording music that will inspire and uplift and delivers performances that are fun, engaging, and fit for every audience. John Paul’s music can be found on all major streaming platforms. To learn more about John Paul or book him for an event please visit his website and follow him on social media (see the full list of links below).

For more information, contact Sarah Von Arx at info@johnpaulvonarx.com

Send Mail to:

P.O. Box 961

150 N 3rd Street

Steubenville, OH 43952-9997

A Message From JLF's New President

Mon, 02 Oct 2023 15:53:59 GMT

Dear Friends,

It is an honor and pleasure to serve you as the next President and Chairman of the Jerome Lejeune Foundation USA. I’d like to thank my friend, David Lejeune, for his effective and tireless work over the last six years.

The cause is close to my heart. My daughter, Rose, was born on Christmas Day six years ago with Down syndrome. Rose is a gift far beyond my family’s expectations, even if at first we did not know what to expect. We need more gifts like Rose.

Dr. Jerome Lejeune sought to reorient science to life. When we place science at the service of the person, we create a healthy society. Inverting that relationship invariably creates unhealthy consequences, including substandard levels of care for those with disabilities. To heal the fractured relationship of science to life, we must rediscover the inherent and inviolable dignity of the human person. But where do we begin?

Following Dr. Lejeune’s legacy, it is our foundation’s goal to provide an abundant life for persons with genetic-based intellectual disabilities through a world-class model of care from the moment of pre-natal diagnosis to the end of a happy life. And, like Dr. Lejeune, we will do it one patient and one family at a time. That is the goal.

So, we know where to begin. We heal the fracture by caring for those who need it most. And we do it despite the challenges, sleepless nights, and worries. We discover that when we make a gift of ourselves, we are rewarded by a far greater and inestimable gift in return. If you have witnessed the sweet, smiling face of an inherently beautiful child with Down syndrome, then you know something of the gift I am talking about. In my life, that smile has solved a lot.

On behalf of our team, thank you for your continued prayers, time, and support. I look forward to hearing from you as we begin our work anew.

Sincerely,

Daniel C. Schreck, President and Chairman
Jerome Lejeune Foundation USA

The incredible European basketball champions with Down syndrome

Mon, 25 Sep 2023 15:57:54 GMT

The inspirational Italian champions with Down syndrome show their athletic prowess for the world to see.

Reported by Aleteia: "The Italian national basketball team has just beaten Finland 34-18 to become European champions, having already won the World Championships in 2018, 2019, and 2022. And this weekend, they also notched up another big win to gain their third European gold medal." Read the full article here .

Why people with Down syndrome are living longer than ever

Mon, 25 Sep 2023 15:50:28 GMT

New photo project celebrates doubling of life expectancy since 1980

"People with Down syndrome are living longer than ever and an ongoing photo project aims to upend stereotypes about them" writes Jon Tattrie in this CBC News story .

Defending the Dignity of those with Downs Syndrome

Tue, 19 Sep 2023 21:21:29 GMT

Aired on Relevant Radio on March 29, 2023, President Daniel Schreck was interviewed on The Drew Mariani Show to discuss the work of the Lejeune Foundation USA. Listen to the interview segment here .

Jérôme Lejeune’s legacy advances ‘abundant life’ for people with Down syndrome in world and church

Tue, 19 Sep 2023 21:12:36 GMT

Jerome Lejeune Foundation USA President Daniel Schreck was interviewed by OSV News for an article marking World Down Syndrome day 2023. Read the article in its entirety at Catholic Review .

All You Need T21

Tue, 19 Sep 2023 20:56:10 GMT

To celebrate World Down Syndrome Day on March 21, the Jerome Lejeune Foundation USA launched the #AllYouNeedT21 campaign, asking people to submit their own pictures and videos: "People with Down Syndrome have a message and mission for you today. Love. It's #AllYouNeedT21. Help us celebrate #worlddownsyndromeday by posting a video saying, I love you." View the compilation video at allyouneedt21.com .

Remembering Brandon

Thu, 03 Aug 2023 12:40:50 GMT

Dear Friends,

It was 10 years ago today that Brendan Kelly, the saintly son of our dear friend and fellow board member, Frank Kelly, passed away. Today we want to ask Brendan to intercede for our loved ones with Down Syndrome and/or cancer. Brendan was both a heroic person with Down syndrome and heroic witness as he suffered from cancer. We need those heroes.

You can read about Brendan here: The Boy with the Front-Door Key to Heaven

Finally, with the celebration of Easter behind us, we also wanted to pass along two recent media interviews where I had the opportunity to speak about our foundation's mission.

Relevant Radio with Drew Mariani: Defending the Dignity of those with Down Syndrome

Catholic Review: Jerome Lejeune's legacy advances abundant life

Peace,

Daniel C. Schreck
President and Chairman
Jerome Lejeune Foundation USA

Lejeune Award and Peanut Butter Falcon

Mon, 15 May 2023 12:28:16 GMT

Zack "The Peanut Butter Falcon" and Daniel

Dear Friends:

We were proud to sponsor the Jerome Lejeune Service Award at the Hearts of Joy International gala this last Thursday. Founded by Lauren Costabile, Hearts of Joy provides life-saving heart surgeries to infants with Down Syndrome in developing countries and the U.S. They have a particular focus on nations like Uganda, where babies with Down Syndrome are systematically denied care. Seeing this injustice, Lauren did something about it.

The first recipient of the award, Dr. R. Krishna Kumar, leads the team that provides surgery for the Hearts of Joy babies out of India. Believe it or not, some of these babies from developing nations must travel all the way to India with the Hearts of Joy team because medical professionals in their home country deny surgery under the erroneous and heinous belief that their lives aren't worth living. As a sign of his selflessness and dedication, the Dr. Kumar donated the gift from our foundation to offset the cost of the next surgery his team performs. Now, that’s a man who exemplifies the life of Dr. Lejeune.

We look forward to partnering with Hearts of Joy in the future as we systematically build practical medical solutions for the underserved people we serve in the U.S. If we want to deliver on that promise, our foundation will need more people like Lauren. We intend to save hearts, and convert them too.

Please check out their website and consider getting involved too: Hearts of Joy International – Website .

On a personal note, the special emcee of the evening was Zack Gottsagen, the co-star of The Peanut Butter Falcon . If you haven’t seen the award-winning movie with Zack and Shia LaBeouf, I highly recommend it. Zack was a skilled co-host, formidable dancer, and I thoroughly enjoyed meeting him.

Thank you for your continued support. Let’s keep building.

Daniel C. Schreck
President and Chairman
Jerome Lejeune Foundation USA

Announcing: David Lejeune retiring as President

Wed, 15 Feb 2023 13:16:04 GMT

It was almost 6 years ago that I first I accepted the position of President of the Jerome Lejeune Foundation USA. Since then, we’ve filed amicus briefs in key legal battles regarding the rights of those with Down syndrome. We’ve released educational materials like the Handbook on the Human Embryo to inform the public about the facts on life. We piloted medical care options for those with Down syndrome in the United States. And we have always been committed to standing against the culture of death , and highlighting the latest scientific developments and inspiring stories about those with Down syndrome.

Last year, with your support, we were thrilled to be part of the historic victory for life with the defeat of the abo minably evil Roe vs. Wade preceden t . It’s been an honor to be at the helm as so many exciting legal developments continue to transpire.

The pro-life movement in America has entered a new era. And as Providence would have it, so have I.

Ecclesiastes 3 reminds us that “to everything there is a season.” I’ve been profoundly grateful for the opportunities I’ve had to further the pro-life cause and support the Down syndrome community over the past six years. But that season is now coming to an end.

It is with a heart full of gratitude that I share my decision to retire from my role as President of the Jerome Lejeune Foundation USA.

As JLF USA enters this new chapter, I am pleased to announce that my good friend and fellow board member Daniel Schreck will be serving as the new President of the Jerome Lejeune Foundation USA. In addition to his membership on JLF USA’s Board of Directors, Daniel served on the National Council on Disability from 2020-2022 after being appointe d by President Donald J. Trump. He brings unmatched experience and passion to the Foundation as a man of faith and the proud father of a little girl with Down syndrome named Rose.

I am humbled and honored by Daniel’s willingness to step up and assume this responsibility and guide JLF USA into a new era as we increase our focus on medical care.

Daniel Schreck

The late Madame Birthe Lejeune

As I look back on all that we’ve accomplished in scientific research, care, and advocacy, I know that none of it would have been possible without the help of everyone who has come alongside me – from Keith Mason and our board of directors to my good friend the late Madame Birthe Lejeune, wife of Venerable Pr. Jerome Lejeune. I also thank my family for their support and am proud to share that my wife Marie-Ange and all eight of our children are actively pro-life across the nation.

Last but not least, I’d like to thank YOU, our supporters, for helping make all our work possible.

Throughout all my years as President of JLF USA, there’s one experience that will stay with me forever. While I was on pilgrimage to Greece, I encountered a man who was surprised by the amount of time I was spending to defend our little ones with Down syndrome. He told me I was wasting my time – that the lives of those with Down syndrome were not worth living.

Then a few years later, he called me out of the blue to let me know that his wife was pregnant, and the child had Down syndrome. She wanted to abort the baby, but he wasn’t sure. After a series of phone calls with Keith Mason and me, the gentleman finally realized something. “I’m a father and this is my son… and I know I have to protect my son ,” he said.

This was a beautiful story of life not only because the man stood strong to protect his son – but because he had a change of heart. And that is what gives me hope.

Every life is worth living. And every life is worth fighting for – because every human being is created in the image of God.

With my time at JLF USA coming to a close, I know that conviction will continue to guide the foundation in all it does with Daniel Schreck at the helm. Though I will miss you all, I’m excited for what the future holds for JLF USA and will keep you all, the foundation, and our brethren with Down syndrome in my prayers.

In His Love,

David G. Lejeune, President
Jerome Lejeune Foundation USA

Mother-daughter team provides college scholarships for individuals with Down syndrome

Tue, 24 Jan 2023 13:54:40 GMT

This week, the Today Show ‘s Al Roker sat down with Liz Plachta and her daughter Ruby, who has Down syndrome, to learn how their non-profit organization is changing the lives of individuals with Down syndrome.

After Ruby was born, Liz set out to learn as much as possible about Down syndrome so she could help her daughter thrive. As Ruby grew, Liz began thinking about her future plans, and when Ruby was about six months old, Liz decided she wanted to do something to help others with Down syndrome – by paving the way for them to go to college.

Fast-forward to 2011 – and Ruby’s Rainbow was born.

Ruby’s Rainbow is a nonprofit organization that raises funds for partial scholarships for young adults with Down syndrome as they pursue higher education. Since its founding, the organization has given away over $2 million in scholarships to nearly 600 recipients, with 119 awarded in 2022 alone! The lucky students go on to complete a variety of college programs, from associate’s to master’s degrees.

Through their work, Liz and Ruby have already witnessed firsthand how a college education can help improve the lives of individuals with Down syndrome. Liz shared :

“[It’s inspiring to see] the confidence and the life skills that they’re gaining, just by being allowed to go out into the world to make mistakes and learn from them – like everybody.”

With the support of her mom, in a few years Ruby will be joining their ranks to study medicine.

Check out the full video interview below to see some of the lucky applicants’ reactions as they find out they have been awarded Ruby’s Rainbow scholarships.

How a neurological link with Down Syndrome could help with Alzheimer’s early onset prevention

Wed, 07 Dec 2022 13:03:54 GMT

A ne w stud y from researchers at the University of San Francisco (UCSF) has revealed a surprising connection between the neuropathology of those with Down syndrome and those with Alzheimer’s disease. By studying the brains of individuals with these conditions, researchers have discovered that the two groups exhibit the same neurodegenerative tangles and plaques.

Neurological dysfunction seen in people with Alzheimer’s and Down syndrome is caused by an accumulation of misshapen proteins called prions – particularly the Tau and Amyloid beta (Ab) prions. These two prions are abnormally folded proteins that interact with healthy proteins, forcing them to adopt a misshapen structure. Normally, the Tau and Ab proteins support the body: Tau proteins maint ain stabilit y in neurons while amyloid beta proteins promote neurogenesis and memory formatio n . However, in Alzheimer’s, these proteins group into plaques and tangles which accumulate in the brain and cause neurological disfunction.

The observed similarities in neurodegenerative function between the conditions make Down syndrome a potentially valuable model for studying early onset Alzheimer’s and preventing its progression. Stanley P rusine r , the Nobel Prize winner who is senior author of the study, explains:

“Because we see the same plaques-and-tangles pathology at a much younger age in people with Down syndrome, studying their brains allows us to get a better picture of the early process of disease formation, before the brain has become complicated by all the changes that go on during aging. And ideally, you want therapies that address these early stages.”

Medical implant trial results show sleep apnea improvements in children with Down syndrome

Wed, 27 Apr 2022 13:14:15 GMT

After six years of research and over 40 patient surgeries, doctors have successfully fini shed Phase I of trials for a new device that is helping children with Down syndrome sleep through the night.

Surgically implanted in the chest with a wire connecting to the tongue, Ins pire Medical Systems ’ hypoglossal nerve stimulator can be turned on via a remote control to move patients’ tongues while they sleep – helping keep their airways open.

The Phase I results of the trial published last week are very promising. According to the findings, only five of the 42 children with Down syndrome who received implants experienced mouth discomfort after the device was implanted.

To understand how the device is impacting patients, researchers analyz ed their breathing patterns before and after surgery:

”[They] tracked the change in apnea-hypopnea index, or the number of times per hour when someone isn’t receiving a sufficient amount of oxygen while asleep. On average, the device helped patients to have about 50% fewer of these events per hour. For three-quarters of patients, the number of events dropped under the threshold for severe sleep apnea, which is 10 episodes or more per night.”

According to patient testimonials, the device has been life-changing. Kate Dougherty, whose son Elliot was one of the lucky trial members, recently s hared :

“It’s been a miracle… Once we were able to get the sleep apnea under control, all of the other pieces began to fall together. I just can’t imagine how much better life would have been for Elliot if we could have done this sooner.”

The device already received FDA approval for use in adult patients in 2020, and the team at Inspire is working to get it approved for pediatric patients with and without Down syndrome. Not only does the implant help with sleep apnea, but e videnc e also suggests that the device could help “improve speech [in] patient[s] with Down syndrome” – providing rich potential for further research.

Rutledge v. Little Rock Victory

Sun, 30 Jan 2022 13:38:52 GMT

Today, the Supreme Court granted our request to review a legal challenge to Arkansas’ anti-eugenics law which prohibits aborting unborn children merely based on a Down syndrome diagnosis. Lower courts had blocked the law, so we urged the U.S. Supreme Court to review the matter and overrule them. That is exactly what they did today!

T his is a massive victory for the unborn diagnosed with Down syndrome.

This is a massive victory for the unborn diagnosed with Down syndrome. It shows how effective we can be in our advocacy work in state legislatures and the courts. Please celebrate this huge victory by making a generous tax-deductible donation to JLF USA so that we can continue to advocate for the unborn with Down syndrome.

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In partnership with the Alliance Defending Freedom, JLF USA filed an important legal brief in this case supporting the state of Arkansas. I encourage you to read our May 2021 amicus brief.

The Supreme Court granted Arkansas’s petition in the Rutledge v. Little Rock Family Planning case and summarily reversed the lower court’s ruling, sending the case back to the lower court for reconsideration in light of Dobbs v. Jackson Women’s Health Organization .

This means that the court decision that struck down Arkansas’ pro-life law will have to be reviewed again in accordance with the new precedent set by Dobbs . And considering Dobbs overruled both Roe and Casey , in all likelihood, the challenge to Arkansas’ pro-life law will be dismissed – which would be a great victory for life!

We are grateful to all those who prayed and donated to us to bring about this huge victory. We also thank the state of Arkansas for standing for life, as well as the terrific attorneys at Alliance Defending Freedom for presenting our amicus legal brief to the Supreme Court.

Our advocacy work is more important than ever now. With Roe v. Wade being overturned, the regulation of abortion now returns to the states where we can make an incredible difference on behalf of the unborn with Down syndrome. As a grassroots non-profit foundation, our advocacy work, as well as our patient care and other services, are entirely dependent on the financial support we receive from friends, families, and allies. That is why I am asking you to make an immediate one-time emergency donation to support our work. If at all possible, perhaps you can even become a monthly donor at this critical time to help ensure that we have your support on an ongoing basis. All gifts are fully tax-deductible.

We are so grateful for this tremendous victory at the U.S. Supreme Court. No person should have their life extinguished merely because of a diagnosis of Down syndrome. This legal victory is the first of many we expect to achieve now that we will be able to aggressively and effectively advocate for the unborn at the state level. With your continued prayers and financial support , we will be able to celebrate many more victories in the weeks and months ahead!

David G. Lejeune, President
Jerome Lejeune Foundation USA

Conference Stop Discriminating Down at the UN (Geneva) of March 20th 2017

Mon, 20 Mar 2017 13:58:44 GMT

2pm. The room is full and the conference about to start. People are still standing around in the hall. Technicians are busy with their cameras and lenses. Latecomers are still turning up. The speakers take their seats. French, Swiss, but also English, Polish and Dutch settle in. Children with Down Syndrome can be spotted in their mother’s arms. Quite an unusual audience for a conference held at the United Nations in Geneva. But then so is the conference.

Today is March 2nd 2017, the day before the World Down Syndrome Day. The Jérôme Lejeune Foundation, in partnership with the Order of Malta and the NGO ADF-international, has organized under the label Stop Discriminating Down a conference on the mass elimination of children with Down Syndrome before they are born and on the arrival of a new non-invasive prenatal test.

The objective of this conference, A world without Down Syndrome?, is to raise awareness in the United States on the violation of human rights perpetrated in many western countries due to health measures that lead to mass elimination. The new technique, which enables doctors to detect Down Syndrome in embryos at an early stage of pregnancy, using a simple blood test taken from the mother, is about to make things worse.

If this new test was to be introduced in the health system, and therefore generalized, as it is already the case in some countries, the consequences on future babies with Down Syndrome are easy to foresee. To be clear, this would mean developing a means to wipe out the Down Syndrome population.

Already, in England, 90% of mothers end their pregnancy if the test for Down Syndrome comes back positive. In France, this rate reaches 96% and in Denmark 98%. Soon, in some countries, the Down Syndrome population will be facing extinction by lack of new births.

The conference is about to begin; Michel Veuthey, the permanent observer of the order of Malta to the United Nations, is the first to speak. He reminds his audience of the importance of the theme and thanks the United Nations for allowing them to organize the meeting.

The floor is then given to Clotilde Noel, adoptive mother of a daughter with Down Syndrome and author of two books on the subject. She has brought her along and offers a moving testimony about adopting her. Through her experience, she discovered that Down Syndrome was no monstrosity, contrary to what people often believe. Only the idea one has of it can turn it into one: “Everyday Mary teaches us that our role is to love her the way she is”. Opening up to the gift of this new life, it is not long before Clotilde realizes disability is only an illusion, like some sort of deformed shadow hovering over our imagination.

“Of course”, she says, “we had to rethink our daily life when Marie turned up. We had to think about the many appointments with specialists to help her grow up; Of course, our lives have changed but who can say their life remained the same after becoming a parent?”

She then calls upon all states to take on their responsibilities regarding Down Syndrome and NIPT: “We need the State to be in line with us, we need to be protected by laws. Quite the opposite, the State is becoming our enemy number 1 by destroying all our efforts combined over the years.” She wonders: “How can we hope to include children with Down Syndrome if, from the start, almost all children with Down Syndrome are eliminated via NIPT? How can we expect care and research to progress properly?

She ends her talk with a strong tribute to these children who, although different -but then are we not all different from one another? – offer us great lessons of life every day: “These children are the missing key to all people who think too much to live or live too much to think. Those who forget to listen to their heart beating. Those who have everything they need on a material level, but are not satisfied, who are always running after what they are missing. With these kids, you always have everything you need.”

The moderator of ADF-International, Rubén Navarro, then steps down to welcome Kathleen Humberstone and her mother Denise.

Kathleen has Down Syndrome. Raised by loving parents, she is bubbling with projects. Her dream of becoming a model might come true. She also intends to get married to her boyfriend. For her, as for her mother, the idea of prenatal testing is unbearable. “I defy anyone currently promoting the test to come and meet adults with Down Syndrome, such as my daughter Kathleen. I dare them to watch them in the eye and tell them face on that their life is less precious than theirs” were Denise’s final words.

It is then Peter Harteveld’s turn. He is a 33-year-old young adult with Down Syndrome, and lives and works in Holland. He insists on how sad he felt when he sensed his life was not worth as much as others’. “But”, he adds, “he is happy with his life and fulfilled social life.”

Jean-Marie Le Méné, president of the Jérôme Lejeune Foundation, went over the philosophical underpinnings of the eugenic approach concerning unborn children with Down Syndrome. He insists on how this behavior is approved by the liberal economic and political system. This system, relying on no existing exterior or superior norm, forbids as a founding principle to have any principles and to impose on an individual such or such conception of life”. Mr Le Méné adds that this system leads the State to regulate all behaviors through law, even if they seem contradictory because it is enable to resolve them coherently. We end up having a double evolution pulling in two opposite directions: once a child with Down Syndrome is born, progress means inclusion and putting the person before disability; before birth, however, progress means exclusion and putting disability before the person. He concludes by asking all democracies to recognize the “unwritten superior laws which stand for themselves”. If they do not, “the permanent genocide of children with Down Syndrome before birth” will continue.

Next, Dr. Vargas reminds the audience of the decrease, over the last 30 years, in the number of newborn babies with Down Syndrome due to the development of prenatal testing. She shares the means doctors have to break the news of the birth of a child with Down Syndrome to the parents. Among other things, they try to reassure them about their child’s disability and put them in contact with support groups. Alternative solutions concerning the help provided to young mothers and their newborn children do exist and are supposed to reduce the number of abortions.

Alexandra Thompson concludes the conference going over the objectives of the mobilization Stop Discriminating Down. She insists on the fact that children with Down Syndrome have the same rights as others, and have the same value. Promoting prenatal testing while encouraging women to abort means that the lives of children with Down Syndrome are less valuable in the eyes of society. She calls upon all states to stop discrimination based on genetic predispositions.

The audience is then given the opportunity to react. Charlotte Fien has something very strong to say: “Do not murder us before birth. People like me have the right to live”. This young teenager living with Down Syndrome, gives a poignant message creating a parallel between the Nazi’s will to eradicate a certain type of people and the current testing which will have the same consequences.

The many people present were attentive to the very end. Representatives of States’ permanent missions were also present. Spain, Poland, Canada, Colombia and even Hungary and the Holly See came to listen attentively to the requests made by these disabled people and their parents. All families who rarely receive the necessary support from the State.

This conference came as an opportunity to approach the consequences of prenatal testing for Down Syndrome from the angle of human rights. Thanks to the testimonies and expertise given, the audience was able to understand how dangerous such a device can become when a state decides to generalize, systematize and develop it. It particularly endangers the future of Down Syndrome people, but also humanity in general.

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Conference Stop Discriminating Down at the UN (Geneva) of March 20th 2017

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Rome - Italy

The Jérôme Lejeune Foundation participates in the first ever G7 summit on "Inclusion and Disability" in Italy

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