Resources
Drop down list of the most important topics. Links included.
This is a general list of some medical equipment that may help support an individual with Angelman Syndrome. The specific needs for any of these items should be determined by the parent/caretaker and the medical support team.
-Enclosed Crib/Bed
-Gait Trainer
-AFO Orthotics
-Thoracic Lumbar Sacral Orthosis
-Incontinence Supplies
-Shower/Bath chair
-Hygiene and Toileting System
-Wheelchair
-Car Seat or Safety Harness
Angelman Syndrome Foundation Family Fund – details coming soon.
www.adaptivemall.com/
AstraZeneca -If you can’t afford your medicine, AstraZeneca may be able to help.
My Gym Foundation is dedicated to helping children with disabilities and those struggling financially by awarding critically-needed gifts that improve their quality of life.
Disabled Children’s Relief Fund provides assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eye glasses, medical equipment, physical therapy, and surgery.
Communication support: Speech Therapy, AAC (Augmentative and Alternative Communication), Picture Exchange Communication System (PECS).
Physical support: Physical Therapy, Occupational Therapy, Hippo Therapy, Aquatic Therapy.
Behavioral support: ABA Therapy.
Additional Support: Music Therapy, and Surf Therapy.
Angelman Syndrome specific research supports that the Low Glycemic Index Treatment has been over 90% effective for reducing and stopping seizures in individuals with Angelman Syndrome.
The Low Glycemic Index Treatment is a modified version of the Ketogenic Therapeutic diet that has been used by physicians as a treatment for epilepsy since the 1920’s.
Epilepsy Therapeutic Diets: LGIT (Low Glycemic Index Treatment), Ketogenic Diet, and Modified Adkins.
These therapeutic diets need medical supervision. Here are resources to consult about the diet.
MassGeneral Hospital for Children
https://www.massgeneral.org/children/epilepsy/families/growing-up-with-epilepsy-roses-story
The Charlie Foundation
https://charliefoundation.org/
Matthew’s Friends (UK and Canada)
https://www.matthewsfriends.org/
The Angelman Academy – Presuming Potential
At Angelman Academy the chief mission is to revolutionize the education of individuals with Angelman Syndrome to allow them to reach their fullest potential. The primary way they do this is by offering high quality, practical online courses to inform and empower caregivers and professionals to become experts in teaching individuals with Angelman Syndrome.
The ASF IEP Bank is a platform for parents and IEP team members to exchange IEP goals and objectives with each other to assist in planning your student’s IEP.
Project-core.com – A Stepping-Up Technology Implementation Grant Directed by the Center for Literacy and Disability Studies.
Core First – Tobii Dynavox
Tobii Dynavox
Boardmaker
PRC-Saltillo
Lessonpix.com
PrAACtical AAC – supports a community of professionals and families who are determined to improve the communication and literacy abilities.
Angel Flight – Arranges free transportation for medical treatment.
Miracle Flights – Provides flight support for domestic or international travel to U.S. facilities for medical treatment, second opinions and follow-up. Domestic service dog training and retrieval and organ/blood travel assistance.
The Air Care Alliance – Nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service.
AAC Apps (Apple iTunes)
Books on Angelman Syndrome
Products To Help With Daily Life
Target – Cat & Jack Adaptive Clothing
Theraplay – The Sensory Toy Subscription Box
Safe Place Bedding, LLC.
Safe Place Bedding, LLC.
Tommy Hilfiger Adaptive Clothing
Sense-U Baby Video and Breathing Monitor
AngelSense GPS Tracker
Discount School Supply
Fun & Function
Sensory toys and rooms
Theraplay – The Sensory Toy Subscription Box
Mosaic Weighted Blankets
Angelman Today may be an affiliate for some of the products listed and may earn a commission when you click on the links and make a purchase.