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Disease Specific Websites
A central theme is the hemispherectomy surgical procedure. Many parent's children have or had Rasmussen's Encephalitis.
The Sturge-Weber Foundation is the comprehensive resource for all individuals interested in birthmarks, Sturge-Weber and Klippel-Trenaunay. Since 1987, education, referrals, research and awareness are shared with care by volunteers and professionals.
This International e-group is for the private use of The Sturge-Weber Foundation Membership. The SWF assists individuals and professionals seeking information on Sturge-Weber syndrome, Klippel-Trenaunay, and Port Wine Stains. In addition to this forum, the SWF member benefits include: information on the latest research available, access to medical experts, family networking, publications, videos, etc.
Infants have Strokes. Kids have Strokes. Even unborn babies have strokes. Stroke... it's not just an adult condition. Don't forget - Kids Have Strokes, Too! Spread the word.
The Hemispherectomy Support Group was created to support the familes of children diagnosed with Hemimegalencephaly (HME) and Cortical Dysplasia (CD). The mission of the HSG is to empower families to better and more efficiently make informed decisions regarding their child's total care by providing up to date information on medical centers, related medical issues, current research and best practices regarding surgery, therapy and general care, links to valuable local and national resources, and peer-to-peer support. The HSG strives to be a place where HME families can find not only information, but support, hope and encouragement from each other.
To provide support and discuss treatment options for children diagnosed with hemimegalencephaly.
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Discussion Groups/Support Groups/eCommunities/Forums
Description: We are a group of families that share information about our experiences in dealing with neurological problems relating to children. A central theme is the hemispherectomy surgical procedure. This involves the removal of one side of the brain. Many times this surgery is necessary as a result of Rasmussen's Syndrome (RS), a degenerative brain disorder. Many of us have had experience with hemispherectomy procedure with our children. There is a large portion of the group that had the surgery as a result of RS. We seek to help each other.
Description: Discussion Group for children and young people with hemiplegia. This group is out of the UK.
Description: Online support group for kids with Hemiplegia or Hemiplegic Cerebal Palsey
Description: Our eCommunities offer the unique opportunity to interact with individuals affected by epilepsy from around the world through threaded discussions and real-time chats.
Description: Epilepsy.com's community includes Forums, blogs and more.
Description: Coping-With-Epilepsy (CWE) aims to provide a forum for people living with epilepsy (both people with epilepsy and those who live with or care for people with epilepsy) to discuss epilepsy, seizures, medications, treatments and all aspects of living with and coping with the disorder.
Description: A forum for Epilepsy support from the UK
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General Support
Description: Organization, offering support and information to families of infants, children, and young adults who have hemiplegia or hemiplegic cerebral palsy. Hemiplegia in children is due to a number of different causes and includes blood vessel disorders (stroke), infection, trauma, tumors, and other rare causes. The most common cause of hemiplegia in children is infant stroke or childhood stroke.
Description: It is a nonprofit organization that runs resource centers across the country that give children with special needs access to play, bringing both joy and learning into their lives. An extensive library of toys, adaptive equipment, computer software and hardware, electronic playthings and books are selected and adapted to fit the way each individual child's mind and body works.
Description: Conductive Education (CE) teaches children and adults with physical disabilities such as cerebral palsy, dyspraxia, multiple sclerosis, Parkinsons, stroke and head injury how to overcome their movement difficulties.
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Camps
Seeks to enrich the lives of individuals with disabilities by broadening their experiences and improving their social skills while increasing their capacity for independence and providing opportunities to have camp-loads of FUN.
Through our programs for children, AbilityFirst provides creative, nurturing environments for boys and girls with disabilities to learn, develop key life skills, build confidence – and, of course, have fun!
When parents enroll their child with AbilityFirst, they also gain access to a variety of family support resources. By truly partnering with families, we help to ensure that every child reaches his or her full potential.
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Rehab Equipment / Orthotics / Toys
Description: Abilitations' primary focus is serving the needs of individuals with special needs and learning differences. Our occupational therapy, special education, physical therapy, and speech therapy product mix focuses on movement, positioning, sensorimotor, exercise, aquatics and play.
One of Europe's leading manufacturers of tricycles, bicycles and tandems for adults and children with a special focus on mobility products for challenged children and adults. Haverich is also a leading supplier of adaptive equipment.
Description: Dragonfly offers over 1,250 products online, from toys to technology, for children who have special needs. Thousands of parents and professionals share their knowledge with one another about technology in the PLAY Pen section of Dragonfly's site.
Description: Enabling Devices, a division of Toys for Special Children, Inc., is a company dedicated to developing affordable learning and assistive devices to help people with disabling conditions. It offers a catalog of toys, including electro-mechanical assistive and adaptive devices.
National AMBUCS, Inc. is a non-profit service organization consisting of a diverse group of men and women who are dedicated to creating mobility and independence for people with disabilities. Members fulfill the organizations mission by: *Performing various forms of community service *Donating AmTryke. therapeutic tricycles to individuals who are unable to ride traditional bikes *Awarding scholarships to therapists
Description: Kaplan's Concepts for Exceptional Children's Catalog is filled with over 700 items tested and designed in the areas of: gross motor, fine motor, life skills, communication, and resources- technology. This catalog is targeted for inclusion programs, special education, physical, speech and occupational therapists and home use.
Learning Toys
Toys "R" Us offers a "Toy Guide for Differently Abled Kids" which provides toys that have been tested and chosen for children with special needs. Each toy has been assigned specific symbols identifying its strengths and potential play benefits. ( Catalog not available online, but mailed upon request.)
Various stretchy suits and wearable stretchy aids to help with various positioning issues including hemiplegic dropped shoulder, dropped foot, and other issues.
Products: Dorsiflection Assist, Full Body, Lower Body, Pediatric Hemiplegia, Shoulder Positioning, Wrist & Thumb
Cacade AFO and Orthotic Accessories are primarily geared towards the pediatric patient, most of who have neuromuscular challenges.
Products: DAFO series, Leapfrog, and Kangaroo.
Allard USA is committed to working together with O&P facilities and medical professionals throughout North America to offer innovative orthotic solutions to help improve function and quality of life for individuals with physical challenges.
Products: Kiddie Gait, Toe Off.
Rehabilitation products for individuals suffering from neurological injuries such as stroke survivors and Hemiplegia. Devices to help with hemiplegic issues in the arm and hand.
Products: SaeboFlex, SaeboStretch, and SaeboReach.
Electrical Stimulation Devices used for rehabilitation of the leg and hand.
Products: L300 (leg), H200 (hand)
The four distinct scooters address four unique segments of the market: home use, institutional settings, amusement parks, and special needs.
Sell and Rent : Scooters, Stair Lifts, Misc Lifts, Bikes and Trikes, Wheel Chairs, Walkers
Tripp Trapp Chair by Stokke, The Chair that Grows with Your Child
Choose from a variety of card holders that can sit on the table and display your cards or that will easily lay down on the table.
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Shoes
A line of shoes designed specifically to address the needs of children wearing AFO's, DAFO's, and orthotics.
Designed for AFOs, Children and Adult Adaptive Footwear Needs
The ANSWER 2 shoes have been specifically designed to look like other children's sneaker or adult jogging shoes - yet, accommodate the specific space and functional needs of AFO, KAFO and shoe insert wearers.
The shoes come in regular and wide-width. Take the insole out of the AFO shoe. Most of the shoes are under $20 and they often have a buy 1 pair get the second pair half-off sale. (also available through Shopko and Pamida).
Nordstroms: They will only charge you for one pair, even if you have to have a different size or width. Not only that but even if you have to modify the shoe in any way, they will return the shoe with no question, and help you find something else that works.
This is a double depth shoes for women. They're a Mary Jane style with a velcro strap.
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Life Aids
Aids for daily living.
Bikes and Trikes, Seating and Positioning Aids, Book.
Active Forever website has many life aids, including this vibrating watch to address hemi-neglect.
Fiskars. Total Control Blunt-Tip Scissors. Tri-loop designed handle allows for increased control and safer cutting so kids have the confidence to work on their own. 4"L. Ages 4+.
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One-Handed Hints
One Family's practical approach to tying a shoe with one hand; using the other hand as a helper.
"One-Handed in a Two-Handed World" by Tommye-Karen Mayer (2nd Edition or 3rd Edition 2007)
Practical hints for activities of daily living with the use of one hand.
Adult elastic shoe laces that stay tied; variety of colors. Work for both tennis shoes and leather oxfords.
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Typing
A one-handed typing tutorial for Windows and Macintosh.
Keyboards, Tutorials, Software, videos, and more.
Wikipedia Link.
Keyboard for one-handed OR two-handed typing.
Converting your old keyboard into a one-handed, using windows configuration.
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Vision
Hemianopsia, Visual Neglect, Driving Issue Treatments.
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Speech
Baby BumbleBee has a number of titles designed to boost language development. These are great for an infant or toddler, or for parents concerned about their childs language development.
Resources for Oral Motor Exercises.
Kurzweil Educational Systems' research-aligned technologies provide complete reading, writing, and study solutions to help all students overcome learning challenges and succeed academically.
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School Issues
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Wish Organizations
"Since 1980, the Make-A-Wish Foundation. has given hope, strength and joy to children with life-threatening medical conditions". This organization grants wishes, regardless of income. The condition does NOT have to be terminal.
"We help seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities." The condition does NOT have to be terminal. Hemispherectomy Kids qualify, as long as your doctor will recommend your child. Simply apply on-line. Let your doctor know that it is coming, and that he/she agrees that the condition is "serious" or "life threatening". It doesn't have to be the neruologist or neurosurgeon. It can be your child's pediatrician or other specialist.
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Financial Assistance
Miracle Flights for Kids. is the nation's leading nonprofit charitable flight organization.
The Social Security Act authorizes multiple waiver and demonstration authorities to allow states flexibility in operating Medicaid programs. Most States have a Medicare Waiver Program that our kids qualify for and can offer substantial financial relief once in place. Search for Medicaid Waiver and your state.
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Books
"One-Handed in a Two-Handed World" by Tommye-Karen Mayer (2nd Edition or 3rd Edition 2007)
Practical hints for activities of daily living with the use of one hand.
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Publications
Articles each month on Rehabilitation Research. The cost is $300 / year, but the abstracts are free. Your Therapist and/or Neurologist may be able to get you the full text free.
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Papers, Medical Reviews, Summaries & Studies
Originally published in May 2007. Contains history of hemispherectomies, statistics, mentions Hopkins and UCLA. A general, but informative article
This article is from the New Yorker. It gives a detailed description of a hemispherectomy.
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Professional Associations / Boards / Societies
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Education
A Guide to Brain Anatomy, Function, and Symptoms.
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Blogs / Caring Sites
Free online patient update tools where patients and their families can inform other family members and friends on a loved one's health. Update everyone at once.
A Blog site connected to a google account. Hosts text, pictures, video, and more.
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Helpful Videos
Here is a video of a 6 year-old female with EPC. The simple partial seizures, at this point, have been going on for 6 months. 24 hours a day, 7 days a week. They are also in the eyes and face (not shown here). Paresis has set in on this hand and arm. The hand is completely non-functional and the arm has very little function. EPC is frequently seen in children with Rasmussen's Encephalitis, but is not always present. This child also has Simple Partial Seizures and Complex Partial Seizures.
Posted in Epilepsy, Google Video, Health & Medicine, Neuroscience by MC on November 26th, 2006 This film shows surgeons from the Neuroscience Institute at Le Bonheur Children’s Medical Center perform a hemispher- ectomy on a 6-year-old girl with epilepsy. This involves removing a large part of the girl’s left hemisphere; the corpus callosum, the bundle of approximately 100 million nerve fibres connecting the two hemispheres, is then severed.
An amputee shows the way to tie shoe laces with one hand or one arm. (no prosthetic help)
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Helpful Links
The Hemispherectomy Foundation does not promote or recommend any products or services.
(Please send link ideas, corrections, or deletions to website@hemifoundation.org)
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© 2008 - 2009, Hemispherectomy Angels, Inc., a Non-Profit Corporation Disclaimer of warranties and liability | Web Design by Rachel Waters
Disclaimer of warranties and liability | Web Design by Rachel WatersPO Box 1239 | Aledo, Texas 76008 All Accounting Services Provided by Shelton, Mead, and Shelton, CPAs
All Accounting Services Provided by Shelton, Mead, and Shelton, CPAs