Education Technology

Rare Diseases, Hopeful Research

Introduce students to research to find preventions, treatments and cures with "Rare Diseases, Hopeful Research," a TI-Nspire™ problem-based activity that complements middle grades life sciences and high school biology curricula.

Explore the STEM behind little-known, often fatal conditions

Encourage students to explore, observe and reason with science and mathematics with this innovative activity. Developed by Sanford Health medical professionals and Texas Instruments, the activity gives middle grades and high school science students a glimpse into the research laboratory.

The activity engages students in:

  • Understanding the nature and definitions of rare diseases
  • Calculating the probabilities of a rare disease occurring in a family and a population
  • Interacting with simulations of cellular activities that are correlated to a childhood genetic disorder

The activity provides students with immediate feedback, enabling them to self-assess their work and correct misconceptions, as well as objective and subjective questions teachers can use to gauge student understanding.

The TI-Nspire™ activity Rare Diseases, Hopeful Research puts students in Sanford Health’s laboratories and clinics, where scientists are working to understand Batten disease and find a cure for it.

In the role of medical researchers, students will get a relevant look at the value of a science, technology, engineering and math (STEM) education by seeing how the disciplines are vital to finding a cure for Batten disease, a genetic and often fatal childhood condition.

Jason Flanagan, a certified genetic counselor at Sanford Health who helped develop the activity, described the educational ladder that led to his career helping people decide about genetic testing for potential disorders.

"A bachelor's degree is required with coursework in subjects like biology, chemistry and psychology. Then we complete a graduate program in genetic counseling and pass an exam for certification," he says.

Flanagan, who is working with the family of a Batten disease patient, said researchers have traced the cause of the disorder to faulty lyosomal enzymes in neurologic cells. Without the enzymes to clear waste from cells, they die, and if enough are affected, disabilities begin emerging, often resulting in death within a few years.

Jill Weimer, Ph.D., director of the Children’s Health Research Center at Sanford Research, leads a team of experts looking for a cure for Batten disease.

"Our team will be even closer to screening several different treatment methods, which could include gene therapy or stem cells," she says.

Rare diseases quick facts

In the United States, a disease
is defined as "rare" if
fewer than 200,000 people
are affected by it

There are more than
7,000 known
rare diseases

About 30 million people
in the United States
have a rare disease

About one-half of rare disease patients are children

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