rare or undiagnosed disorders Archives • Page 4 of 7 • Ollibean

U.S. Department of Education Reaches Agreement with School District on Services for Students with Disabilities

2012-04-27T06:29:38-04:00By Ollibean|Categories: Articles, General, Inclusive Education|Tags: all disabilities, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, DOE, down syndrome, education, ESE, learning disabilities, medically fragile, mitochondrial disorders, muscular dystrophies, OCR, rare or undiagnosed disorders, spinal muscular atrophy|

The U.S. Department of Education announced today that its Office

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Working to Give All Students the Ability to Succeed

2012-04-26T19:13:37-04:00By Ollibean|Categories: Articles, General, Inclusive Education|Tags: all disabilities, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, education, ESE, hearing impairment, learning disabilities, medically fragile, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorders, spinal muscular atrophy|

Tech-Now, Inc. is one of the many organizations across the

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NuclearMitome Test most comprehensive genetic test available for mitochondrial disorders

2016-11-10T10:12:12-05:00By Cody Lawson|Categories: blog, General, Medical|Tags: all disabilities, mitochondrial disorders, rare or undiagnosed disorders, Transgenomic Inc|

After almost a year’s worth of clinical use, Transgenomic’s NuclearMitome Test appears to be succeeding in offering doctors a more efficient and complete method for diagnosing people potentially suffering from mitochondrial disorders.

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Struggle over how to evaluate special ed teachers

2012-04-25T08:54:39-04:00By Ollibean|Categories: Articles, General, Inclusive Education|Tags: all disabilities, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, education, ESE, learning disabilities, medically fragile, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorders, spinal muscular atrophy|

Lynne Sladky / AP In this April 3, 2012, photo,

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Deaf Olympic hopeful uses social media to fight discrimination

2016-11-10T10:12:12-05:00By Lauri Swann Hunt|Categories: Advocacy, blog, General, Lifestyle|Tags: advocate, all disabilities, all kids, Autism Spectrum Disorders, cerebral palsy, deaf, Food allergies, hearing impairment, inclusion, inclusive, Marcus Titus, mitochondrial disorders, muscular dystrophies, Olympics, rare or undiagnosed disorders, self-advocate, spinal muscular atrophy, USA Swimming|

Marcus Titus, top U.S. breaststroker, rallied for change and got it. USA Swimming will allow the use of hand signals to accomodate Deaf swimmers at the summer Olympic trials.

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Disabled Military Protection Act Allows Military Families to include Special Needs Trusts within the Survivor Benefit Plan

2012-04-22T13:37:22-04:00By Ollibean|Categories: Articles, Editor's Picks, Finances, General, Parenting|Tags: all disabilities, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, Disabled Military Protection Act, down syndrome, medically fragile, Military Families, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorders, special needs trusts, spinal muscular atrophy, supplemental needs trust|

Currently, under the Survivor Benefit Plan (SBP), a military retiree

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Subconscious Stereotyping

2016-11-10T10:12:12-05:00By Cody Lawson|Categories: blog, Cody Lawson, General, Lifestyle, Think Tank|Tags: Aix-Marseille University, all disabilities, all kids, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, discrimination, down syndrome, muscular dystrophies, rare or undiagnosed disorders, spinal muscular atrophy, stereotypes, T21|

When it comes to negative stereotypes, your subconscious may not be the best dinner guest.

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SchoolBook: Testing Takes Its Toll on Special Needs Students

2012-04-19T18:15:38-04:00By Ollibean|Categories: Articles, General, Inclusive Education|Tags: all disabilities, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, education, ESE, hearing impairment, learning disabilities, medically fragile, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorders, spinal muscular atrophy|

April 19, 2012, 8:12 a.m. It has been a challenging

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Presuming Competence

2016-11-10T10:12:13-05:00By Amy Sequenzia|Categories: Advocacy, Amy Sequenzia, blog, Editor's Picks, General, Lifestyle, Parenting, Think Tank|Tags: all disabilities, all kids, Amy Sequenzia, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, hearing impairment, learning disabilities, medically complex, mitochondrial disorders, muscular dystrophies, Ollibean Think Tank, presume competence, rare or undiagnosed disorders, self-advocates, spinal muscular atrophy|

This issue is very important to me because so many

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Inclusive education still best model, says advocate

2012-04-19T18:18:52-04:00By Ollibean|Categories: Advocacy, Articles, General, Inclusive Education|Tags: all disabilities, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, inclusion, inclusive education, medically fragile, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorders, spinal muscular atrophy|

Gordon Porter says there are now hundreds of specialized teachers

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Implications of bringing genome sequencing Into the consulting room

2012-04-19T22:08:24-04:00By Ollibean|Categories: Articles, Editor's Picks, General, Medical|Tags: all disabilities, Autism Spectrum Disorders, Cambridge, developmental disabilities, genome sequencing, Han Brunner, learning disabilities, mitochondrial disorders, Radboud University Nijmegen Medical Centre, rare or undiagnosed disorders, UK|

These programs, which were discussed last month at a rare-diseases

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The National Center on Accessible Instructional Materials

2013-06-17T14:00:25-04:00By Ollibean|Categories: Inclusive Education, Resources|Tags: Accessibility, all disabilities, all kids, AT, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, hearing impairment, learning disabilities, medically complex, muscular dystrophies, rare or undiagnosed disorders, resources, spinal muscular atrophy, The National Center on Accessible Instructional Materials|

The National Center on Accessible Instructional Materials! This site serves

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Office of Special Education Program’s Discretionary Grants Public Database

2013-06-17T14:18:29-04:00By Ollibean|Categories: Finances, Inclusive Education, Resources|Tags: all disabilities, all kids, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, Grants, hearing impairment, inclusion, inclusive education, learning disabilities, medically complex, muscular dystrophies, Office of Special Education Program's Discretionary Grants Public Database, Office of Special Education Programs, OSEP, rare or undiagnosed disorders, spinal muscular atrophy|

The Office of Special Education Programs (OSEP) at the U.S.

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Life After IEPs

2016-11-10T10:12:13-05:00By Ollibean|Categories: Advocacy, Editor's Picks, General, Inclusive Education, Lifestyle, Resources|Tags: all disabilities, all kids, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, down syndrome, hearing impairment, learning disabilities, Life After IEPs, Mary Mazzoni, medically complex, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorders, spinal muscular atrophy, transition, transitional planning|

Welcome ! If you’re a parent or mentor of

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Stereotypes of Children with Disabilities

2012-04-19T22:33:35-04:00By Ollibean|Categories: Advocacy, Articles, General, Lifestyle|Tags: all disabilities, all kids, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, down syndrome, hearing impairment, learning disabilities, medically complex, muscular dystrophies, PLoS ONE, rare or undiagnosed disorders, spinal muscular atrophy, stereotypes|

Stigmatization is one of the greatest obstacles to the successful

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My Valentine by Paul McCartney- Featuring Natalie Portman and Johnny Depp

2016-11-10T10:12:13-05:00By Ollibean|Categories: ASL Videos, ASL Videos, Deaf and Hard of Hearing, General, Video, Videos|Tags: 'My Valentine', all disabilities, all kids, ASL, ASL videos, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, cross disability, Deaf and Hard of Hearing, down syndrome, hearing impairment, Johnny Depp, medically complex, muscular dystrophies, Natalie Portman, Paul McCartney, rare or undiagnosed disorders, sign language, spinal muscular atrophy|

Paul McCartney Directs His Own 'My Valentine' Videos Featuring Natalie Portman and Johnny Depp using ASL.

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MyVoice AAC

2013-12-30T18:14:26-05:00By Ollibean|Categories: Assistive Technology, Resources, Resources We Love|Tags: AAC, all disabilities, Aphasia, APP, apps, apraxia, Ataxia, augmentative and alternative communication, Autism Spectrum Disorders, cerebral palsy, communication, cross disability, down syndrome, Dysarthria, hearing impairment, muscular dystrophies, My Voice, non verbal, non-speaking, rare or undiagnosed disorders, resource, speech, spinal muscular atrophy, stroke, Traumatic Brain Injury, typing|

MyVoice is a new app, available for Apple and Android

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Teachers Weigh-In: Do We Over Accommodate? Join the Debate…

2012-04-19T22:42:47-04:00By Ollibean|Categories: Articles, General, Inclusive Education|Tags: accomodations, all disabilities, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, education, ESE, medically fragile, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorders, spinal muscular atrophy|

Read more as teachers debate accommodations for students. Pete &

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Watching TV: Even Worse for Kids Than You Think

2012-04-19T22:44:57-04:00By Ollibean|Categories: Articles, General, Lifestyle, Medical, Nutrition, Parenting|Tags: all disabilities, all kids, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, Children's Hospital Boston, developmental disabilities, down syndrome, epilepsy, Food allergies, hearing impairment, medically fragile, mitochondrial disorders, muscular dystrophies, obesity, rare or undiagnosed disorders, spinal muscular atrophy|

It's no secret that sedentary behavior contributes to obesity and

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Aspiring to Conquer Crossover Acting Path

2012-04-11T05:19:49-04:00By Ollibean|Categories: Articles, Assistive Technology, General, Lifestyle, Medical|Tags: "Tribes", all disabilities, all kids, Deaf and Hard of Hearing, Don't Play Me Pay Me, hearing impaired, hearing impairment, mitochondrial disorders, rare or undiagnosed disorder, rare or undiagnosed disorders, Russell Harvard|

It didn’t take much rehearsing for Russell Harvard, who plays

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Marlo Thomas: The Givers: What Inspires Michael J. Fox? A Very Personal Interview

2012-04-19T22:47:16-04:00By Ollibean|Categories: Advocacy, Articles, Editor's Picks, General, Lifestyle, Parenting|Tags: all disabilities, all kids, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, down syndrome, epilepsy, Food allergies, hearing impairment, learning disabilities, medically complex, michael j. fox, mitochofrial disorders, mitochondrial disorders, muscular dystrophies, parkinson's disease, rare or undiagnosed disorders, spinal muscular atrophy|

Unbowed by his disease and still exhibiting his trademark energy,

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Planned and On-The-Spot Curriculum Accommodations in the Inclusive Classroom

2016-11-10T10:12:13-05:00By Ollibean|Categories: Assistive Technology, Events, General, Inclusive Education|Tags: 05/07/2012, accomodations, all disabilities, all kids, Attention Deficit Disorders, cerebral palsy, Concord, down syndrome, epilepsy, hearing impairment, inclusion, inclusive classroom, learning disabilities, mary alson, May 7, medically complex, muscular dystrophies, New Hampshire, rare or undiagnosed disorder, rare or undiagnosed disorders, spinal muscular atrophy, UNH/IOD|

The Paraeducator's Toolbox: Practical Strategies to Support Students with Learning and Behavioral Challenges 5.7.2012 9:00 AM - 3:00pm

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3 genes linked to autism spectrum disorders

2012-04-07T16:53:50-04:00By Ollibean|Categories: Articles, Medical|Tags: ASD, autism, Autism Spectrum Disorders, CHD8, KATNAL2, rare or undiagnosed disorder, rare or undiagnosed disorders, SNC2A|

Mutations in three new genes have been linked to autism,

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2q37 Deletion Syndrome: Searching for Answers

2012-04-07T16:52:06-04:00By Ollibean|Categories: Articles, General, Medical, Parenting|Tags: 2q37 Deletion Syndrome, all disabilities, developmental disabilities, rare or undiagnosed disorder, rare or undiagnosed disorders|

The day after my son Aiden was born, the doctors

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Epidemic, Awareness and Us, Autistics

2016-11-10T10:12:14-05:00By Amy Sequenzia|Categories: Advocacy, Amy Sequenzia, blog, Editor's Picks, General, Lifestyle, Parenting, Politics, Think Tank|Tags: acceptance, all disabilities, all kids, Amy Sequenzia, autism, autism epidemic, Autism Spectrum Disorders, CDC, cerebral palsy, developmental disabilities, epilepsy, Ollibean Contributor, Ollibean Think Tank, rare or undiagnosed disorders, self-advocacy, self-advocates|

By now everyone knows about the new numbers on autism

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Therapists Address Esophageal Atresia

2012-04-04T08:35:55-04:00By Ollibean|Categories: Articles, General, Medical|Tags: all disabilities, Autism Spectrum Disorders, cerebral palsy, Children's Hospital Boston, developmental disabilities, down syndrome, Esophageal Atresia, medically fragile, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorder, rare or undiagnosed disorders, spinal muscular atrophy|

The Esophageal Atresia Treatment Program at Children's Hospital Boston in

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Dysphagia (Swallowing Problems)

2012-04-04T08:33:00-04:00By Ollibean|Categories: Articles, General, Medical|Tags: all disabilities, Becker Muscular dystrophy, duchenne muscular dystrophy, dysphagia, limb-girdle muscular dystrophy, medically complex, medically fragile, mitochondrial disorders, muscular dystrophies, muscular dystrophy, myotonic dystrophy, rare or undiagnosed disorders|

Melissa Conrad Stöppler, MD, is a U.S. board-certified Anatomic Pathologist

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Helping Rare Disease Patients Find Their Voice

2012-03-25T18:19:51-04:00By Ollibean|Categories: Articles, General, Nutrition|Tags: advocacy, all disabilities, medically complex, medically fragile, mitochondrial disorders, rare or undiagnosed disorders|

Stephen P. Spielberg, M.D., Ph.D., FDA’s deputy commissioner for medical

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Lives Not Worth Living : by Amy Sequenzia

2016-11-10T10:12:16-05:00By Amy Sequenzia|Categories: Advocacy, blog, General, Parenting, Politics|Tags: all disabilities, Amy Sequenzia, Autism Spectrum Disorders, Candlelit Vigil for Disabled People Murdered by Relatives and Caregivers, cerebral palsy, developmental disabilities, Disability, down syndrome, epilepsy, George Hodgins, murder, rare or undiagnosed disorders, self-advocacy|

The title of this blog is an expression seen in many blogs written by disabilities advocates and self-advocates. Wasn’t his life worth living? Isn’t mine or the lives of all disabled people? The murder of 22 year-old autistic George Hodgins prompted the latest, very strong protests from the autistic community against the media coverage focused on the “reasons” for the killing, while ignoring George’s, the victim, life.

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Makayla Norman,14, was starved to death last year, attorney general calls for change

2012-03-20T07:15:47-04:00By Ollibean|Categories: Articles, General, Medical, Parenting, Politics|Tags: all disabilities, ataxic cerebral palsy, cerebral palsy, cp, developmental disabilities, Makayla Norman, mitochondrial disorders, muscular dystrophies, Ohio, rare or undiagnosed disorders, spinal muscular atrophy, starvation|

The Ohio attorney general is calling for change after learning

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New ADA accessibility requirements took effect March 15

2016-11-10T10:12:17-05:00By Ollibean|Categories: blog, General, Lifestyle, Politics|Tags: 2010 ADA Standards for Accessible Design, Accessibility, ADA, all disabilities, all kids, Attention Deficit Disorders, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, epilepsy, Food allergies, hearing impairment, learning disabilities, medically complex, mitochondrial disorders, muscular dystrophies, rare or undiagnosed disorders, spinal muscular atrophy, Title I and Title II of the ADA of 1990|

For the first time in history public fitness centers, public swimming pools, recreational facilities, parks, golf and mini-golf courses, detention facilities and courtrooms, playrooms and amusement rides must adhere to the governments accessibility requirements. The rules also clarify issues that have come up in the 20 years regarding bathroom dimensions, reach ranges and accesible routes.

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University Center for Excellence in Developmental Disabilities at Georgetown University

2013-06-17T14:31:38-04:00By Ollibean|Categories: Advocacy, General, Inclusive Education, Resources|Tags: all disabilities, Autism Spectrum Disorders, cerebral palsy, developmental disabilities, down syndrome, Georgetown University, mitochondrial disorders, rare or undiagnosed disorders, resources, UCEDD, University Center for Excellence in Developmental Disabilities, Washington D.C.|

The mission of the University Center for Excellence in Developmental

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