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Pioneering innovative therapies to improve the lives of those with genetic intellectual disabilities

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How Much Did it Cost to Fly to the Moon?

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Jerome Lejeune once said that it would take much less intellectual effort to "cure" Down syndrome than to put a man on the moon. Research to improve the lives of those living with Down syndrome could progress much more rapidly if there was adequate funding to support the small but committed group of researchers working hard each day to discover treatments. Down syndrome is the most common form of genetic intellectual disability, but the poorest funded by the NIH. Private foundations, like the Jerome Lejeune Foundation, need the support of generous donors to help increase the pace, and to get drugs now being tested into the clinic where they can improve lives.


Jerome Lejeune was once quoted saying that “curing” Down syndrome would take much less intellectual effort than putting a man on the moon.

Many disagreed with him, but he thought it was inconceivable that a treatment would not one day be found to significantly improve the lives of children and adults living with Down syndrome.

21 years after his death, Dr. Lejeune’s confidence in medical research is finally being realized. Thanks to the Jerome Lejeune Foundation, and others, children born with Down syndrome today have the hope of a very different future than what was possible not long ago.

Not even five years ago, most would have agreed that efforts to develop treatments to improve lives of individuals with genetic intellectual disabilities was a waste of time and money. Today; however, clinical trials are being successfully conducted by major pharmaceutical companies on drugs to improve genetic conditions like Down syndrome and Fragile X syndrome (see sidebar). Very recent research even indicates it may some day be possible to at least partially silence the extra 21st chromosome in people with Down syndrome!

Now, back where this article began… Jerome Lejeune believed that curing Down syndrome would take less intellectual effort than putting a man on the moon. Maybe so, but we have not had NASA’s budget to reach that goal.

Our trip to the moon back in 1969 cost approximately $25.4 billion, or the equivalent of over $140 billion in today’s dollars. The NIH’s current budget for Down syndrome research is only $18 million.

The U.S. has a brilliant and committed research community, but they have not had sufficient funding to make the kind of progress we know is possible. We need to raise more money to support their work.

Thanks to our benefactors’ generosity, the Jerome Lejeune Foundation continues to drive medical research internationally toward treatments that may be available to patients within a decade. In 2015, the Jerome Lejeune Foundation will spend approximately $4.5 million on our research program, or about 25% of the U.S. federal government’s commitment to Down syndrome, but we need much more.

Please consider supporting, or increasing your support to the Jerome Lejeune Foundation. With you, we can make an incredible difference in the lives of people all over the world living with Down syndrome and other genetic intellectual disabilities.

A new initiative has begun at our Paris office to raise $600,000 to support the next phase of a clinical trial we have already been funding in Barcelona on the use of EGCG to improve memory and executive function in Down syndrome. The previous phase enrolled participants 18-30 years old, but indications are that EGCG may be even more effective in younger patients so this next step will invite younger patients into the study. Recruitment will begin as soon as the necessary funding has been secured.

The Jerome Lejeune Foundation is also funding a clinical trial at the Jerome Lejeune Institute in Paris on the use of folinic acid and thyroid hormone to improve the psychomotor development of infants 6-18 months old.

Other Clinical Trials:

  • Roche: Two Phase 2 of a clinical trials on their drug RG1662 in individuals spanning 6 - 30 years old. RG1662 is a drug intended to address cognitive and behavioral deficits in people living with Down syndrome.
  • Balance Therapeutics: A phase 1b clinical trial in Australia to test the safety and efficacy of a compound to improve cognition in individuals 13-35 years old.
  • Transition Therapeutics: A completed phase 2a study to evaluate the effectiveness of ELND005 to enhance cognition and executive function in individuals with Down syndrome
  • AC Immune: A pending clinical trial of ACI-24, an active vaccine intended to stimulate a patients immune system to produce antibodies that prevent beta-amyloid accumulation and clear plaques on the brains of individuals with Down syndrome to prevent Alzheimer’s disease.
  • Alcobra: The FDA has granted “fast track” status to their drug “Metadoxine” to expedite and facilitate the further development and testing of their drug now in phase 2 development for the treatment of Fragile X syndrome.