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miniTOM:Exponential Medicine


With the generous support of Ovid Pharmaceuticals, TOM had the honor of hosting a miniMakeathon at Exponential Medicine. Makers from around the world descended on San Diego to develop open-source solutions with Stacy McCarrell Ruddick, mother of three children with Angelman Syndrome. The conference was a tremendous opportunity to raise awareness about TOM, Angelman Syndrome, and to discuss solutions with the world's leading innovators of healthtech. The resulting solutions from the makeathon have already benifited other children experiencing similar challenges.

Arnon Zamir, Founding Director of TOM with Stacy McCarrell Ruddick, mother of three children with Angelman Syndrome - on the mainstage of Exponential Medicine

Arnon Zamir, Founding Director of TOM with Stacy McCarrell Ruddick, mother of three children with Angelman Syndrome - on the mainstage of Exponential Medicine

Angelman syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia). Most affected children also have recurrent seizures (epilepsy) and a small head size (microcephaly). Delayed development becomes noticeable by the age of 6 to 12 months, and other common signs and symptoms usually appear in early childhood.

Children with Angelman syndrome typically have a happy, excitable demeanor with frequent smiling, laughter, and hand-flapping movements. Hyperactivity, a short attention span, and a fascination with water are common. Most affected children also have difficulty sleeping and need less sleep than usual.

(source: https://ghr.nlm.nih.gov/condition/angelman-syndrome)

Stacy McCarrell Ruddick with her children Olivia (11), Denise (7), and Harrison (9)

Stacy McCarrell Ruddick with her children Olivia (11), Denise (7), and Harrison (9)

Stacy's three children were all born with Angelman Syndrome. Olivia (11), Harrison (9), and Denise (7) are happy, outgoing children. They are all nonverbal and use communication devices to communicate, they are treated for seizures, and have a heightened sensitivity to different materials.

Stacy shared a few of her challenges:

  1. From experience she can usually tell if one of her children is about to experience a seizure, but she doesn't have a way to detect seizures. Current products on the market include wristbands, but her children won't wear them.
  2. Stacy's children have challenges with fine motor skills and it can make using their iPad based communication devices challenges. 

  3. All three children go to schools with emphasis on mainstreamed education. Using pens and markers can be challenging as a result of challenges with fine motor skills and the material of the writing utensils.

  4. Child gates are made for small children. Stacy keeps dangerous objects in her kitchen, but as her children grow, her child gate no longer keeps them out of danger.
Makers from around the world flew to Exponential Medicine to develop open-source solutions with Stacy for her children.

Makers from around the world flew to Exponential Medicine to develop open-source solutions with Stacy for her children.

Makers of all background met with Stacy at her home - the dream team was made up of Ilan Sherman, Jonathan Asher, Matan Ninio, Guy Sheffer, Hagit Alon, Yoav Argov, Oded Shorer, Bo Pollet, Matthew Leong Chun, Dexter Ang, David Cipoletta, Sarayah Moore, and Gal Friedman.

Using beddit technologies, Matan and Guy programmed the device to track heartrate, change in temperature, and movement. By placing it on the children's beds, the data collected will be able to provide valuable information to track seizures.

Using beddit technologies, Matan and Guy programmed the device to track heartrate, change in temperature, and movement. By placing it on the children's beds, the data collected will be able to provide valuable information to track seizures.

This DIY lock for the kitchen gate was designed by Matt, instead of a latch, this lock uses a series of patterns to unlock - making the kitchen safe once again. (This product is still in development)

This DIY lock for the kitchen gate was designed by Matt, instead of a latch, this lock uses a series of patterns to unlock - making the kitchen safe once again. (This product is still in development)

Olivia has a challenging time using her communication device on her iPad, by creating a anchor she is able to press icons with easier precision.

Olivia has a challenging time using her communication device on her iPad, by creating a anchor she is able to press icons with easier precision.

This solution was first designed at TOM:Nazereth! We are excited to see the need for an affordable grid for iPad-based communication devices. Simple lazer cutting and 15 minutes later, the iPads are easier to use!

This solution was first designed at TOM:Nazereth! We are excited to see the need for an affordable grid for iPad-based communication devices. Simple lazer cutting and 15 minutes later, the iPads are easier to use!

Stacy brought her friend Jamie to the miniMakeathon. Jamie's son also has Angelman Syndrome and doesn't like the feeling of plastic. At 5 years old, learning to write is critical for development. Bo developed this soft but 'crunchy' sleave for markers and pens.

Stacy brought her friend Jamie to the miniMakeathon. Jamie's son also has Angelman Syndrome and doesn't like the feeling of plastic. At 5 years old, learning to write is critical for development. Bo developed this soft but 'crunchy' sleave for markers and pens.

Stacy mentioned that Harrison doesn't enjoy writing because of challenges around his fine motor skills. After further analysis, the team noticed that while he has stiffer movement in his wrist, it looked like he just needed a little extra support for his elbow. This small contraption suctions to the table, has a moveable soft disk (held down with magnets) - and will give Harrison the support he needs.

Stacy mentioned that Harrison doesn't enjoy writing because of challenges around his fine motor skills. After further analysis, the team noticed that while he has stiffer movement in his wrist, it looked like he just needed a little extra support for his elbow. This small contraption suctions to the table, has a moveable soft disk (held down with magnets) - and will give Harrison the support he needs.

Sponsored by:

Earlier Event: September 23
TOM:Buenos Aires 2016
Later Event: November 28
TOM:Melbourne 2016