Element A: Presentation and Justification of the Problem

In 2018, 1 out of 10,000 females in the United States were diagnosed with Rhett Syndrome (RTS). Parents/teachers have a hard time finding a video game that is adapted to a RTS persons' limited mobility.

Problem background/statistics:

Rhett syndrome is a severe neurodevelopmental disorder
1 in every 10,000 girls in the US are diagnosed with Rhett syndrome.
Rhett syndrome is caused by mutations in the MECP2 gene

This syndrome affects the central nervous system
There are other conditions that are caused by changes in other genes which have similar signs and/or symptoms
Only occurs within females

Experts:

Dr. Alan Percy

Director

Rett Clinic and Research CenterUAB – Civitan International Research Center1720 – 2nd Avenue South CIRC 320EBirmingham, Alabama 35294-0021
Jerry Childers 800-822-2472, Ext 7

Katie Field

Speech Therapist

Newcomb Academy3351 Val Verde Avenue, Long Beach, CA 90808
kfield@lbschools,netPhone: 209-620-2719School extension: 562-430-1250;6714

Dr. Kathryn Smith

RN, DrPH

Rett ClinicUSC UCEDD Rett Syndrome ClinicChildren’s Hospital Los Angeles4650 Sunset Blvd., MS#53Los Angeles, CA 90027
Contact Kathy Smith: 323-361-8301

Kourtney Morgan

Special Education Teacher

Millikan High School2800 Snowden Ave, Long Beach, CA 90815
kmorgan@lbschools,netPhone: 562-665-6890

Dr. Mary Jones

Director

Katie’s Clinic for Rett Syndrome and Related DisordersUCSF Benioff Children’s Hospital OaklandOutpatient Center, 5th floor744 52nd Street Oakland, CA 94609

Richard Haas

Rady Children’s Hospital – San DiegoNelson Pavilion, 3rd Floor8001 Frost StreetSan Diego, CA 92123

Susan

Beech-Willis

SpHC Teacher

McBride High School7025 E. Parkcrest, Long Beach, CA 90808
sbeechwillis@lbschools,net

Taylor Corcoran

Special Education Aid

Millikan High School2800 Snowden Ave, Long Beach, CA 90815
corcorantaylor@gmail.comPhone: 562-899-1014

Interviews:

Questions:

Do you work with the Specialized Health Care Program or individuals with Rhett syndrome? If so, which?
Are you a parent of a student in the Specialized Health Care Program or who has Rhett syndrome? If so, which?
Would your child or student be interested in an adaptive video game?
What would you like to see in an adaptive video game?
What are some struggles you witness your child or students go through when trying to play a video game?
If there was an adapted video game, how much would you be willing to pay? $0-$1.98, $1.99-$4.98, $4.99-$10.00?

Kourtney Morgan

Special Education Teacher

No, but works in Special Education
No
Yes
There should be less buttons than a regular controller
Doesn't notice many struggles but too many buttons can be very difficult
However much is necessary, the highest amount

Taylor Corcoran

Special Education Aid

No, but works in the Special Education programs at high schools
No
Yes
Hopefully not too easy but not too hard, maybe just stick to 1 joystick and 2 big buttons
controllers are hard to hold/use because of the small buttons
$4.99-$10.00

Susan Beech-Willis

Specialized Health Care Program Teacher

Yes - Both
No
Yes, absolutely
1 button, roller coasters or animals doing fun things, similar to any other video game
Most students don't know how or where to go, make it only 1 choice, movement on the screen is necessary for them to feel comfortable, no decision making
Highest amount, more than $5-$10

Allison Wolfson

Specialized Health Care Program Aid

Yes, works with Specialized Health Care Program
No
Yes, some students would love to play a video game
Some have difficulties with bringing their arms in and some have difficulties with educational games, some games go by too quickly
Teach good posture, animals moving around the screen, something attached to wheel chair
At least $50-$100

Scholarly Articles:

Retts Syndrome

Adaptive Technology

Similar Products

While an object calibrated with the camera is in a student’s hand, the camera around calculate distance and motion the student is moving the object for the game to interact with them.

There is an object like an aircraft or a wearable article like augmented reality glasses that can be sensed from cameras around that will move objects on the screen. The object will have lights that the cameras will detect and create data from the position of the object.

This patent utilizes a phone-like keypad in order for people to make selections and play games using their feet. The letters/numbers on the phone serve as a communication device much like a game controller.

An interactive device that communicates with a computer using buttons, levers, and wheels. This patent serves to bring some of the gaming experiences to life (driving with an actual steering wheel or talking on an actual phone) but it can be adapted to disabled students that can't use computers.

Sources:

Inserm. (2019). Orphanet: Rett syndrome. Retrieved from https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=778.

Rett syndrome. (n.d.). Retrieved from https://rarediseases.info.nih.gov/diseases/5696/rett-syndrome.

Rett syndrome - Genetics Home Reference - NIH. (2019, November 12). Retrieved from https://ghr.nlm.nih.gov/condition/rett-syndrome#statistics.

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