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MIT and Colorado are centers of important Down syndrome research

| Apr 3, 2019 | Guardianships & Conservatorships |

As we recently discussed, March 21 was World Down Syndrome Day. The date has significance because people with Down syndrome have three copies of chromosome 21, instead of the usual two. Here in Colorado, the day was marked by an annual celebration at the state Capitol that included the governor and lieutenant governor.

What is Down syndrome?

About 700 infants are born with this genetic condition in our country annually. According to The Boston Globe, Down syndrome is the “most common form of mild to moderate intellectual disability.” In addition to developmental disability, other symptoms associated with Down syndrome may include:

  • Alzheimer’s disease, often early onset
  • Autoimmune conditions and increased risk of ear infections, pneumonia and other infections
  • Weak muscle tone and slow physical development
  • Delayed communication skills
  • Mental health problems like autism, attention deficit hyperactivity disorder or ADHD and anxiety, causing trouble with concentration, judgment, socialization and behavior
  • Cardiac abnormalities
  • Hormonal and glandular problems
  • Hearing loss and vision impairment
  • Leukemia and other blood disorders
  • Digestive problems
  • Spinal abnormalities
  • Sleep disorders
  • Dental abnormalities and gum disease
  • Seizures
  • Celiac disease

New MIT center and University of Colorado center

The Massachusetts Institute of Technology is creating the Alana Down Syndrome Center to focus on research into this condition. The center is the result of a $28.6 million donation from a foundation established by the Brazilian parents of a young girl with Down syndrome. MIT’s goals for the center include cellular, brain and genetic research to develop medical advances for those with Down syndrome and the development of assistive technology to enhance their communication, daily living and social skills.

The Globe article cites Dr. Peter Bulova, director of a Down syndrome center at the University of Pittsburgh, as saying that Down syndrome research resources are “miniscule.” He also said that the MIT center will be comparable to another internationally known institution dedicated to Down syndrome research at the University of Colorado medical campus in Aurora.

One of the organizations within the CU center is the Linda Crnic Institute for Down Syndrome, where 200 research scientists are dedicated to improving the health and lives of people with Down syndrome, according to the Anschutz Medical Campus website. Other Colorado resources for Down syndrome include:

  • The Global Down Syndrome Foundation in Cherry Creek
  • The Rocky Mountain Alzheimer’s Disease Center
  • The Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado
  • The Adult Clinic for Down Syndrome at Denver Health

The life expectancy of a person with Down syndrome has risen to an average of 60, which underscores the need for parents and others who care about those with the condition to do careful estate and life planning designed to protect their loved one financially and medically. At our law firm, we provide a range of legal services for clients with loved ones who have Down syndrome, including planning and advocacy for victims of abuse and neglect in group homes, day programs and similar settings.

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