The RE Children's Project 
The RE Children's Project was founded to increase awareness regarding Rasmussen's Encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure. The organization also supports research dedicated toward the recovery process following hemisphrectomy surgery, a life altering surgery that is the only known "cure" for the disease.

Rasmussen's Hemispherectomy Yahoo Discussion Group 
A central theme is the hemispherectomy surgical procedure. Many parent's children have or had Rasmussen's Encephalitis. 

The Sturge-Weber Foundation 
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.

Sturge-Weber Support Group
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.

Pediatric Stroke 
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. 

Spastic Cerebral Palsy
Cerebral Palsy Guide provides free educational materials, financial options and support to help those across the country affected by this disorder.

Cerebral Palsy Group
Cerebral Palsy Group is an online resource for anyone who has been affected by cerebral palsy, birth injuries, or brain injuries. The Cerebral Palsy Group was created to provide answers and all types of assistance needed to help improve the quality of life for loved ones and family members with cerebral palsy. The Cerebral Palsy Group provides FREE support and useful resources to individuals and families who have been diagnosed with cerebral palsy and other disabilities.

Cerebral Palsy Guidance
Cerebral Palsy Guidance was created to provide answers and assistance to parents of children with cerebral palsy. Their goal is to reach as many members of the cerebral palsy community as possible, building up a network of support, as well as providing necessary assistance.


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Discussion Groups/Support Groups/eCommunities/Forums

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 

The Epilepsy Foundation eCommunities 
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. 

Epilepsy.com Community 
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. 

Epilepsy Forum of UK 
Description: A forum for Epilepsy support from the UK 


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General Support

Children's Hemiplegia & Stroke Association (CHASA) 
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. 

National Lekotek Center 
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. 

Conductive Education 
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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Camp Summit 
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.

Ability First
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. 

Dragonfly Toy Company 
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. 

Enabling Devices 
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 
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. 

Lakeshore Learning 
Learning Toys 

Toys "R" Us
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 

Cascade - The DAFO People 
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 Orthotics 
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) 

Riding Scooters 
The four distinct scooters address four unique segments of the market: home use, institutional settings, amusement parks, and special needs. 

Freedom Cars 
Sell and Rent : Scooters, Stair Lifts, Misc Lifts, Bikes and Trikes, Wheel Chairs, Walkers 

Tripp Trapp Chair 
Tripp Trapp Chair by Stokke, The Chair that Grows with Your Child 

Playing Card Holders 
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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A line of shoes designed specifically to address the needs of children wearing AFO's, DAFO's, and orthotics. 

Keeping Pace Orthopedic Footwear 
Designed for AFOs, Children and Adult Adaptive Footwear Needs 

Answer 2 Shoes for AFOs 
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. 

Payless Smart Fit Brand 
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. 

Drew Bloom II 
This is a double depth shoes for women. They're a Mary Jane style with a velcro strap. 


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Life Aids

Sammons Preston 
Aids for daily living. 

The Equipment Shop 
Bikes and Trikes, Seating and Positioning Aids, Book. 

Vibralite 3 - Vibrating Watch 
Active Forever website has many life aids, including this vibrating watch to address hemi-neglect. 

Fiskars 3-Fingered Scisors 
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

Powerpoint Presentation

Tie a Shoe with One Hand 
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. 

Shoe Laces that stay tied
Adult elastic shoe laces that stay tied; variety of colors. Work for both tennis shoes and leather oxfords. 


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Five Finger Typist 
A one-handed typing tutorial for Windows and Macintosh. 

One Handed Typing 
Keyboards, Tutorials, Software, videos, and more. 

One Handed Keyboard 
Wikipedia Link. 

Keyboard for one-handed OR two-handed typing. 

Microsoft Windows Configuration 
Converting your old keyboard into a one-handed, using windows configuration. 


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Vision and Sensory

The Low Vision Center of Indiana 
Hemianopsia, Visual Neglect, Driving Issue Treatments.

Visual exploration training is no better than attention training for treating hemianopia
 For Comlete Article eMail Stella de Bode
Patients with homonymous visual field defects experience disablingfunctional impairments as a consequence of their visual loss. Compensatory visual exploration training aims to improve the searching skills of these patients in order to help them to cope more effectively. However, until now the efficacy of this training has not been compared to that of a control intervention. Given that exploration training uses the visual search paradigm,which is known to require visual attention, in this study the efficacy of the technique was compared with training that requires visual attention but not exploration. Participants completed either exploration training (n = 21), or attention training followed by exploration training (n = 21). Assessment of thevisual field, visual search, reading and activities of daily living were performed before and after each intervention that the participants completed. The results revealed that both the exploration training and the attention training led to significant improvements in most of the visual tasks. For most of the tasks exploration training did not prove superior to attention training,and for reading both types of intervention failed to yield any benefits. The results indicate that attention plays a largerole in the rehabilitation of homonymous visual field defects.

Sensory Success Tools
 Click for Powerpoint Presentation from 2010 Hemi Foundation Family Retreat and Conference in Indianapolis


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Baby Bumblebee Language Development 
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. 

Speechville Express 
Resources for Oral Motor Exercises. 

Kurzweil Educational Systems 
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

Make-A-Wish Foundation 
"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. 

Starlight Children's Foundation 
"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. 

Songs Of Love - The Medicine of Music
The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges. 

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Financial Assistance

Dreams for Danny
Surgical Evaluation Travel Assistance

Miracle Flights 
Miracle Flights for Kids. is the nation's leading nonprofit charitable flight organization. 

Medicaid Waiver 
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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"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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"Archives of Phyical Medicine and Rehabilitation" 
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

Post-hemispherectomy Hydrocephalus in Children, A Comprehensive, Multi-institutional Review

Articles about Hemispherectomy

When Half of a Brain is Better than a Whole 

Scientific American article on hemispherectomies
Originally published in May 2007. Contains history of hemispherectomies, statistics, mentions Hopkins and UCLA. A general, but informative article 

The Deepest Cut 
This article is from the New Yorker. It gives a detailed description of a hemispherectomy. 

Struggling with Rasmussen's Syndrome 

Mild Injury May Render Brain Cells Vulnerable To Immune System Attack 

Cognitive development and pediatric epilepsy surgery 

Spoken Language Outcomes After Hemisherectomy 

Hemimegalencephaly: A Study of Abnormalities Occurring Outside the Involved Hemisphere 


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Professional Associations / Boards / Societies

American Academy of Neurology 

Child Neurology Society 

The Encephalitis Society 

National Institute of Neurological Disorders and Stroke 

Society of Neuroscience 

American Association of Neurological Surgeons 

The American Board of Neurological Surgery 

Office of Rare Diseases 


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About Brain Injury 
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. 

Care Pages 

Caring Bridges 


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Helpful Videos

Epilepsia Patialis Continua (EPC) or Continuous Partial Epilepsy 
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. 

Watch & Learn : A Live Functional Hemispherectomy : Parental Guidance Suggested 
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. 

One-handed Shoe Tying
An amputee shows the way to tie shoe laces with one hand or one arm. (no prosthetic help) 


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