SUPPORT NETWORKS
By: Carmen Willings
teachingvisuallyimpaired.com The following is a list of support networks and organizations whose mission is to provide information, research and support to persons with specific visual impairments and diseases. |
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American Association of Pediatric Ophthalmology and StrabismusThe goals of AAPOS are to advance the quality of children's eye care, support the training of pediatric ophthalmologists, support research activities in pediatric ophthalmology, and advance the care of adults with strabismus.
The Achromatopsia NetworkThis is an information network for individuals and families who are affected by achromatopsia and for professionals interested in achromatopsia.
All About Vision: Virtually Everything in SightAll About Vision provides a wealth of information on many topics related to vision. It includes information on: contact lenses, LASIK & Vision surgeries, eyeglasses, sunglasses, eye exams, visual conditions, cataracts, low vision, computer vision, sports vision, eye safety, nutrition & eyes, children's vision, teens, vision over 40, vision over 60, cosmetic eye procedures, vision insurance, resources and videos.
American Nystagmus NetworkAmerican Nystagmus Network is a non-profit corporation seeking to improve the quality of life for all persons and families affected by nystagmus, through organized community support, education and public awareness.
Angelman Syndrome FoundationThe Angelman Syndrome Foundation provides information about Angelman syndrome and publishes a monthly newsletter, Voices of Angels.
Association for Macular Diseases The Association for Macular Diseases provides support, resources and assistance to individuals with macular disease, their caregivers, and the professional community.
BCM Families FoundationBCM Families Foundation is a non-profit organization whose mission is to eradicate Blue Cone Monochromacy, a rare genetic x-linked disorder, by supporting the most promising biomedical and scientific research that will lead to a cure.
Canadian National Institute for the BlindThe Canadian National Institute for the Blind rovides information regarding eye diseases and living with vision loss. CNIB includes information about eyes including eye conditions, eye care, eye safety as well as the opportunity to "ask the expert". The Living with Vision Loss section includes resources on independent living, learning and leisure, safe travel, how-to videos, braille, and guide dogs. Resources also include projects, research grants and awards, and funded projects.
Charge Syndrome foundation, Inc.Charge Syndrome foundation, Inc. provides support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.
Children's Glaucoma Foundation Children's Glaucoma Foundation is a nonprofit organization dedicated to supporting programs for children with glaucoma.
FOCUS: For Our Children’s Unique SightFOCUS: For Our Children’s Unique Sight provides information, education and support to those affected by optic nerve hypoplasia and septo optic dysplasia world wide.
Foundation Fighting BlindnessThe urgent mission of the Foundation Fighting Blindness is to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases. For a $25.00 annual membership fee, FFB offers information and referral services for affected individuals and their families as well as for doctors and eye care professionals. Their national conference is usually held every year.
Glaucoma Research FoundationThe Glaucoma Research Foundation is a national non-profit organization dedicated to finding a cure for glaucoma. Funds glaucoma research world-wide.
ICAN ICAN a voluntary non-profit organization of families and professionals dedicated to lending support to individuals who want to learn more about microphthalmia and anophthalmia.
International Foundation for Optic Nerve Disease (IFOND)The International Foundation for Optic Nerve Disease (IFOND) is a website dedicated to the promotion of research into the causes, prevention, and treatment of optic nerve disease, and to the dissemination of information about optic nerve disease.
Lions ClubsThe Lions Club is the world's largest service club organization. Their mission is to empower volunteers to serve their communities, meet humanitarian needs, encourage peace and promote international understanding through Lions clubs. For nearly 100 years, their members have worked on projects designed to prevent blindness, restore eyesight and improve eye health and eye care for hundreds of millions of people worldwide.
Low Vision GatewayThe Low Vision Gateway provides points to access information regarding low vision and blindness. The site offers information on low vision aides, professional and parent organizations and many other vision specific issues for both children and adults.
Macular Degeneration FoundationThe Macular Degeneration Foundation is dedicated to those who have and will develop macular degeneration. Offers the latest information, news, hope and encouragement. Includes links to resources such as Low Vision Centers, Therapists, Physicians and Support Group.
The National Eye InstituteThe National Eye Institute (NEI), part of the National Institutes of Health, leads the federal government's research on the visual system and eye diseases. NEI supports basic and clinical science programs that result in the development of sight -saving treatments. Resources include a clinical studies database, publications, and materials list, photos, images and videos as well as statistics and data.
National Organization for Rare DisordersThe National Organization for Rare Disorders (NORD) is a nonprofit organization representing all Americans affected by rare diseases. It provides information for patients and families (assistance programs, information center, online communities, NORD meetings, clinical trials, patient organizations), for medical professions (research grants and resources), for industry, and rare disease information.
NOAHNOAH is a non-profit organization that offers information and support to people with albinism, their families and the professionals who work with them. Publishes a quarterly magazine, Albinism InSight.
Nystagmus NetworkNystagmus Network is a UK charity run by individuals and families affected by nystagmus. Provides patient information, support and scientific research charity for nystagmus in Europe.
Stargardt's DiseaseStargardt's Disease is a web resource that provides information, news and research specific to Stargardt's Disease.
Vision Research ROPARD FoundationVision Research ROPARD (Retinopathy of Prematurity and Related Diseases) is a website whose focus is on ROP, PFVS (persistent fetal vascular syndrome, retinoschisis, and FEVR (familial exudative vitreoretinopathy). They offer the most current information on all pediatric retinal diseases.
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TVI's Guide Complete Set Bundle + BONUS Resources
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TVI’s Guide to Teaching the ECC: An Activities Based Curriculum for Teaching Students who are Blind or Visually Impaired The TVI’s Guide to Teaching the ECC is a digital pdf available for download. It is designed specifically for fellow itinerant Teachers of Students with Visual Impairments (TVI’s), and consists of over 400 activities and topic areas of discussion for instructing students in the Expanded Core Curriculum. The activities are age-neutral and multi-sensory and therefore can meet the needs of the broad range of students served on an itinerant caseload serving. The activities can be individualized to the students various learning modalities and scaffold in order to challenge students but ensure success. Select those activities that align with the student’s learning objects based on the student’s unique visual needs and academic and developmental level. In addition to the core activity areas, each of the 32 Thematic Units incorporates additional unique ECC concepts and skills providing you with a years’ worth of activities. These units are cyclical and can be used repeatedly to help students build on prior knowledge and develop a deeper understanding of concepts. Each unit includes suggestions for activity adaptation associated with the unit. These include lists of objects, possible community-based experiences, environmental print, poems, children & young reader books, children's songs, pop culture songs, movies, and websites. In addition to the book, the following two supplements are included: ·      TVI’s Guide to the ECC Concept Checklist ·      TVI’s Guide to the ECC Activities Checklist For complete product details and additional images, visit the TVI's Guide product page. TVI's Guide to the ECC Product details ·      Digital pdf download: 346 pages (11 pt font) ·      Publisher: Teaching Students with Visual Impairments ·      Author: Carmen Willings ·      Language: English Visual Efficiency & Near Magnifier Fluency Worksheets: TVI's Guide to the ECC Grab and Go Supplements The Near Magnifier Fluency Worksheets is a Grab and Go supplement to the TVI's Guide to Teaching the ECC. This workbook is a pdf download that can be printed on demand for use with students. It contains five different types of worksheets for developing visual motor skills and near magnifier fluency skills particularly with the use of a video magnifier. As a companion to the TVI’s Guide to the ECC, the worksheets correspond to each of the 32 ECC Thematic units. The worksheets, along with a list of environmental print for each thematic unit, are designed to help students refine their visual motor skills while reinforcing ECC concepts presented in the thematic units.  For complete product details and additional images, visit the Visual Efficiency & Near Magnifier Product Page. Visual Efficiency & Near Magnifier Fluency Worksheet Details: ·      Digital pdf download: 210 pages ·      Publisher: Teaching Students with Visual Impairments ·      Author: Carmen Willings ·      Language: English Thematic Keyboarding & Braille Fluency and Maintenance Worksheets: A TVI’s Guide to Teaching the ECC Grab & go Supplement The Thematic Keyboarding & Braille Fluency and Maintenance Grab and Go ECC worksheet packet is a print on demand workbook that contains worksheets in print and simulated braille to use for data collection. Present the student with a hard braille copy and use the worksheets to document accuracy and fluency in reading braille. As a companion to the TVI’s Guide to the ECC, the worksheets correspond to the ECC Thematic activities presented in the curriculum guide. These word lists and sentences will help the student refine their keyboarding or braille reading skills while bridging ECC concepts presented in the thematic units. Although the lists and passages can be produced using a manual braillewriter, you may also copy and paste the passages into any braille translation software for quick production on an embosser. They may also be entered into a typing program such as APH’s Talking Typer to build keyboarding fluency. For complete product details and additional images, visit the Thematic Keyboarding & Braille Fluency & Maintenance Product Page Thematic Keyboarding & Braille Fluency Worksheet Details: ·      Digital pdf download: 338-page print and simulated braille worksheets ·      Publisher: Teaching Students with Visual Impairments ·      Author: Carmen Willings ·      Language: English Thematic Vocabulary Cards and Checklists: Grab & Go ECC Supplement The Thematic Vocabulary Cards and Checklists Grab and Go ECC supplement is a 446 page pdf downloadable print on demand workbook that includes 2940 vocabulary card on 3 1/2" x 2" templates divided by each of the 32 Thematic Units along with a checklist of each unit words in print and simulated braille. As a companion to the TVI's Guide to the ECC, the vocabulary cards correspond to the ECC Thematic activities presented in the curriculum guide. Additional Use: Teachers of Students with Visual Impairments can have a extremely varied caseloads. It is possible to go several years without having a student on your caseload who requires braille instruction. Like other skills, if you do not practice your braille regularly, it is easy to lose those skills. Use these checklists and cards to maintain your braille skills. Fold the checklist along the line dividing the print from the braille. Choose to either read the print and produce the word in braille using a braillewriter or read the simulated braille and decode it. Finally, these vocabulary cards and checklists may be used with family members or peers who are interested in learning and practicing the braille code. For complete product details and additional images, visit the Thematic Vocabulary Cards & Checklists Product Page Thematic Vocabulary Cards and Checklists Details: ·      Digital pdf download: 446-page print on demand resource ·      Publisher: Teaching Students with Visual Impairments ·      Author: Carmen Willings ·      Language: English BONUS! Lotto Cards The LOTTO Cards Grab and Go Supplement includes 37 theme related unit cards along with activity suggestions that support activities within the TVI's Guide to Teaching the ECC. On My Way File Folder Cards Print and use these cards to represent locations the student may visit that are related to the current thematic unit. Use these with the On My Way File Folder Game outlined in the TVI's Guide to Teaching the ECC p. 27. NEW! Access to TVI's Guide Bonus Membership Pages Note: All products are digital pdf downloads. Once you make your purchase you will be directed to an order confirmation page where you will find the download link. This download will also be included on the receipt sent to the email address you provide. The pdf download can be found directly under the order number. If you encounter any difficulty, please let me know and I can assist you. |
