Resource Links

If you would like to learn more about any of the disabilities discussed in Listen to Our Stories, you may find the following websites useful. A number are wholly devoted to kids, or have sections that focus on their concerns, and will be especially helpful to young people with disabilities and their parents and caregivers. The list of sites is by no means comprehensive. Nor does mention of a specific organization, company, individual, treatment, or product imply endorsement, either by the editor of this anthology or by any of the young people who contributed their stories. It is intended, rather, to deepen readers’ understanding of the stories in this anthology and to point a way to further exploration of the disabilities included here.

Topic Areas

Acquired brain injury (ABI) | Anxiety | Apert’s syndrome | Aphasia | Attention deficit disorder (ADD)/attention deficit hyperactivity disorder (ADHD) | Blindness | Burn injury | Cardiac anomaly | Cavernous hemangioma | Centronuclear myopathy | Cerebral palsy (CP) | Chronic fatigue immune dysfunction syndrome (CFIDS)/chronic fatigue syndrome (CFS) | Chronic pain | Cleft lip and palate | Cognitive disability | Craniofacial condition | Deafness | Depression | Down syndrome | Epilepsy | Facial condition | Fibromyalgia syndrome (FMS) | Hand anomaly | HIV/AIDS | Juvenile rheumatoid arthritis (JRA) | Learning disability (LD) | Mental health disability | Multiple chemical sensitivity (MCS) | Muscular dystrophy (MD) | Myotubular myopathy | Obsessive compulsive disorder (OCD) | Osteogenesis imperfecta (OI) | Panic disorder | Seizure disorder | Stroke | Tourette syndrome | Traumatic brain injury (TBI) | Williams syndrome | Other websites of interest

Websites That Focus on Specific Disabilities

Acquired brain injury (ABI):

The Brain Injury Association of America: http://www.biausa.org
Among its many activities, the Brain Injury Association facilitates prevention awareness, acts as a clearinghouse of community service information and resources, and participates in legislative advocacy.

Anxiety:

See “Mental health disability.”

Apert’s syndrome:

Teeter’s Page: http://www.apert.org
This upbeat site was created by the parents of a child named Teeter who has Apert’s syndrome. It invites other kids with the syndrome to become a part of its community.

See also “Craniofacial condition” and “Hand anomaly.”

Aphasia:

National Aphasia Association: http://www.aphasia.org
NAA promotes public education, research, rehabilitation, and support services to assist people with aphasia and their families.

See also “Acquired brain injury” and “Stroke.”

Attention deficit disorder (ADD)/attention deficit hyperactivity disorder (ADHD):

» new link »   Born to Explore! The Other Side of ADD: http://www.borntoexplore.org
With the assertion that “there is rarely a case of ‘pure’ ADD,” this website explores what it considers “the many possible sources of ADD-like behaviors,” among them allergies and sensitivities, bipolar disorder, creativity, family problems, sensory integration dysfunction, and temperament differences. While BTE’s author, Teresa Gallagher, states clearly that she is not “any kind of medical professional,” she provides extensive information about each source the website explores, often including links to works by experts in the field.

Children and Adults with Attention Deficit Disorder (CHADD): http://www.chadd.org
With 200 chapters throughout the U.S., CHADD’s mission is “to improve the lives of people affected by AD/HD.”

See also LD Online under “Learning disability.”

Blindness:

American Council of the Blind: http://www.acb.org/profile.html
Among its many services, this national membership organization provides support and legal assistance to consumer advocates on matters relating to blindness; gives scholarship assistance to post-secondary students who are blind or visually impaired; and maintains an online job bank.

National Federation of the Blind: http://www.nfb.org/nfb/Default.asp
NFB seeks to improve the lives of people who are blind through advocacy, education, research, and technology, as well as through programs that encourage independence and self-confidence. The National Organization of Parents of Blind Children is a division of NFB. 

Burn injury:

The Phoenix Society for Burn Survivors, Inc.: http://www.phoenix-society.org
Through peer support, education, collaboration, and advocacy, the Phoenix Society aims to provide support to anyone affected by a burn injury.

Cardiac anomaly:

American Heart Association:
http://www.americanheart.org/presenter.jhtml?identifier=1200000
The mission of the AHA is to reduce disability and death from cardiovascular diseases and stroke.

Kids With Heart National Association for Children’s Heart Disorders, Inc.:
http://www.kidswithheart.org
The aim of Kids With Heart NACHD, Inc., is to help improve the lives of individuals living with children’s heart disorders and to support affected families.

Cavernous hemangioma:

Angioma Alliance: http://www.angiomaalliance.org
The mission of this organization is “to improve the quality of life for those affected by cerebral cavernous malformations through education, support, and promotion of research.”

The National Organization for Rare Disorders/Cavernous Malformation:
http://www.rarediseases.org
NORD is a federation of individuals and organizations committed to “the identification, treatment, and cure of rare disorders.” This link will bring you to a report on NORD’s website that explains cavernous malformations (also known as cavernous hemangiomas or cavernous angiomas).

Centronuclear myopathy:

» new link »   The Information Point for Centronuclear and Myotubular Myopathy: http://centronuclear.org.uk
The aim of this website is to bring together people who have Autosomal Dominant Centronuclear Myopathy (CNM), also known as Myotubular Myopathy (MTM), and to create awareness and provide information about it. The website includes personal stories of people who have CNM or who have children with CNM; a FAQ’s section; an events page; and a resources section with links to information about the condition.

See also “Muscular dystrophy.”

Cerebral palsy (CP):

United Cerebral Palsy: http://www.ucp.org
With affiliates around the country, UCP describes itself as “the leading source of information on cerebral palsy” and “a pivotal advocate for the rights of persons with any disability.”

See also Children’s Hemiplegia and Stroke Association (including its Hemi-Kids website) under “Stroke.”

Chronic fatigue immune dysfunction syndrome (CFIDS) (also known as chronic fatigue syndrome or CFS):

AbilityMaine’s “Guide to CFIDS Resources”: http://abilitymaine.org/resource/guides/cfids.html
This website gives links to a wide range of sites pertaining to CFIDS in such categories as CFIDS organizations; youth; disability benefits; and online information and support.

CFIDS Association of America: http://www.cfids.org
The CFIDS Association of America is “the largest and most active charitable organization dedicated to conquering chronic fatigue syndrome (CFS), . . . also known as chronic fatigue and immune dysfunction syndrome (CFIDS).”

» new link »   ME/CFS/CFIDS/Fibromyalgia: The Invisible Disease: http://www.cfs-info.com
Daily news updates, information about current research, extensive support-group listings, and a Chronic Fatigue Syndrome forum message board are among this website’s offerings. Its “Humor and Positivity” section includes a “Funny Bone” page, a listing of restful videos, and tips for surviving a chronic illness. The site provides each registered member with a personal blog.

Chronic pain:

American Pain Foundation: http://www.painfoundation.org
APF promotes recognition of pain as a critical health issue and advocates for widespread changes to ensure that people with pain have access to high quality care.

Cleft lip and palate:

See “Craniofacial condition.”

Cognitive disability:

The Arc of the United States: http://www.thearc.org
The Arc of the U.S., which has state and local chapters across the nation, aims “to include all children and adults with cognitive, intellectual, and developmental disabilities in every community.”

Berkshire Hills Music Academy: http://www.berkshirehills.org
The Academy is “geared to individuals who (1) wish to continue their education after high school in a college-like environment but have significant learning disabilities; (2) have demonstrated ability in, or passion for, music; and (3) wish to pursue their musical potential.”

National Down Syndrome Congress: http://www.ndsccenter.org
NDSC provides information, advocacy, and support concerning all aspects of life for individuals with Down syndrome. Its purpose is “to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.”

The Williams Syndrome Association: http://www.williams-syndrome.org
The WSA is odedicated to enriching the lives of individuals with characteristics of Williams syndrome.”

See also “Learning disability.”

Craniofacial condition:

Children’s Craniofacial Association: http://www.ccakids.com
CCA’s mission is “to empower and give hope to facially disfigured children and their families.”

Let’s Face It: http://www.faceit.org
Let’s Face It aims to “educate the world to value the person behind every face and to bring resources to all who are dealing with and caring for people with facial difference.”

Deafness:

ASLinfo.com: http://www.aslinfo.com
This website provides information to people interested in learning about ASL (American Sign Language) and other aspects of Deaf Culture, and about interpreting.

National Association of the Deaf: http://www.nad.org
NAD ‘s mission is “to promote, protect, and preserve the rights and quality of life of deaf and hard of hearing individuals” in the U.S.

The American Society for Deaf Children: http://www.deafchildren.org
ASDC holds that children who are deaf or hard-of-hearing are entitled to “full communication access in their home, school, and community” and to “educational opportunities equal to those of hearing children.”

Depression:

See “Mental health disability.”

Down syndrome:

See “Cognitive disability.”

Epilepsy:

Epilepsy Foundation: http://www.epilepsyfoundation.org
The Epilepsy Foundation works “to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure.”

Epilepsy in Young Children: http://www.kidsepilepsy.com
Intended to support parents and other caregivers, this site consists primarily of stories of children with epilepsy.

Facial condition:

See “Craniofacial condition.”

Fibromyalgia syndrome (FMS):

National Fibromyalgia Association: http://www.fmaware.org
NFA’s mission is “to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.”

See also ME/CFS/CFIDS/Fibromyalgia: The Invisible Disease under “Chronic fatigue immune dysfunction syndrome (CFIDS).”

Hand anomaly:

Helping Hands Foundation: http://www.helpinghandsgroup.org
Helping Hands provides support and information to families of children with upper limb anomalies.

HIV/AIDS:

Adolescent AIDS Program at Montefiore Medical Center: http://www.adolescentaids.org
Based in New York City, the AAP serves as “a local and national resource for those living with HIV/AIDS; adolescents who are at-risk for HIV infection; healthcare providers who treat adolescents living with or at-risk for HIV infection; and lesbian, gay, bisexual, transgender, or questioning adolescents, their families, and caregivers.”

The Body: http://www.thebody.com
The Body’s mission is to “use the Web to lower barriers between patients and clinicians; demystify HIV/AIDS and its treatment; improve patients’ quality of life; and foster community through human connection.”

Juvenile rheumatoid arthritis (JRA):

American Juvenile Arthritis Organization: http://www.arthritis.org/communities/juvenile_arthritis/about_ajao.asp
AJAO is “a council of the Arthritis Foundation devoted to serving the special needs of children, teens, and young adults with childhood rheumatic diseases and their families.”

Learning disability (LD):

LD Online: http://www.ldonline.org
The website of the National Joint Committee on Learning Disabilities, LD Online describes itself as “the world’s leading website on learning disabilities and ADHD.”

National Center for Learning Disabilities: http://www.ld.org
NCLD provides “essential information to parents, professionals, and individuals with learning disabilities; promotes research and programs to foster effective learning; and advocates for policies to protect and strengthen educational rights and opportunities.” 

See also “Cognitive disability.”

Mental health disability:

The Anxiety Disorders Association of America: http://www.adaa.org
Among its many activities, the ADAA assists individuals with anxiety disorders in finding appropriate treatment and developing self-help skills, and promotes professional and public awareness of anxiety disorders and their impact on people’s lives.

The Dangers of Empathy: http://www.lipstickwarrior.com
The Dangers of Empathy presents “a family’s struggles for safety and stability when facing childhood mental illness.” It is written and performed by Viesia Novosielski (author of “Where They Would Be Safe, They Perish” in Part Four of Listen to Our Stories) and Viesia’s mother, June Gross.

Dr. Diane Austin, ACMT Music Psychotherapy: http://www.dianeaustin.com
Dr. Austin is the Founder and Director of the Music Therapy Program for Adolescents in Foster Care at Turtle Bay Music School (see “A Child with No Family” in Part Two of Listen to Our Stories).

MindFreedom Support Coalition International: http://www.mindfreedom.org
Through nonviolent direct action, MSCI brings together more than 100 grassroots psychiatric-survivor organizations in 14 nations to challenge psychiatric human rights violations such as involuntary electroshock, restraints, and solitary confinement.

National Alliance for the Mentally Ill: http://www.nami.org
NAMI is a grassroots, self-help, support, and advocacy organization of consumers, families, and friends of people with severe mental illnesses, which has state organizations and local affiliates throughout the country.

National Empowerment Center, Inc.: http://www.power2u.org
A consumer/survivor/ex-patient-run organization, NEC holds that “recovery and empowerment are not the privilege of a few exceptional leaders, but rather are possible for each person who has been labeled with mental illness.”

Obsessive-Compulsive Foundation: http://www.ocfoundation.org
The OCF’s mission is “to educate the public and professional communities about OCD and related disorders; to provide assistance to individuals with OCD and related disorders, their family and friends; and to support research into the causes and effective treatments of OCD and related disorders.”

Multiple chemical sensitivity (MCS):

AbilityMaine’s “Guide to Multiple Chemical Sensitivity Resources”:
www.abilitymaine.org/resource/guides/mcs.html
This website gives links to a wide range of sites pertaining to MCS in such categories as pesticides and their alternatives; sick school syndrome; and paint, construction, and home building and repair.

Chemical Injury Information Network (CIIN): http://ciin.org
CIIN is run by the chemically injured for the benefit of the chemically injured. It focuses primarily on education, credible research into MCS, and the empowerment of the chemically injured.

Muscular dystrophy (MD):

Muscular Dystrophy Association: http://www.mdausa.org
MDA describes itself as “a national voluntary health agency dedicated to conquering more than 40 neuromuscular diseases that affect a million Americans of all ages.”

See also “Centronuclear myopathy.”

Myotubular myopathy:

See “Centronuclear myopathy” and “Muscular dystrophy.”

Obsessive compulsive disorder (OCD):

See “Mental health disability.”

Osteogenesis imperfecta (OI):

The Osteogenesis Imperfecta Foundation: http://www.oif.org
The OI Foundation is dedicated to assisting anyone who needs information about OI and promises “medically verified” answers to individual questions.

Panic disorder:

See “Mental health disability.”

Seizure disorder:

See “Epilepsy.”

Stroke:

Children’s Hemiplegia and Stroke Association: http://www.chasa.org (for Hemi-Kids, visit http://www.hemikids.org; for Kids Have Strokes, visit http://www.pediatricstroke.org)
CHASA offers support and information to families of infants, children, and young adults who have hemiplegic cerebral palsy, hemiplegia, hemiparesis, prenatal stroke, childhood stroke, infant stroke, perinatal stroke, neonatal stroke, in utero stroke, and stroke in neonates.

Tourette syndrome:

The Tourette Syndrome Association: http://www.tsa-usa.org
TSA makes information about Tourette syndrome available to schools, medical professionals, and the general public and funds scientific investigations to improve understanding and treatment of the disorder.

Traumatic brain injury (TBI):

See “Acquired brain injury.”

Williams syndrome:

See “Cognitive disability.”

Other Websites of Interest

Ability OnLine: http://www.ablelink.org/public/default.htm
Ability OnLine is “a free internet community where children/youth with disabilities/illness and their parents can meet others like them, make friends from all over the world, share their hopes and fears, find role-models and mentors, and feel like they belong.”

Band-Aides & Blackboards: http://www.lehman.cuny.edu/faculty/jfleitas/bandaides
The goal of this site is to help people understand what it’s like to grow up with medical problems from the perspective of children and teens.

Breath & Shadow: http://www.abilitymaine.org/breath
Breath & Shadow is a monthly journal of literature and disability culture that is written, edited, and produced entirely by people with disabilities.

» new link »   Family Diversity Projects: http://www.familydiv.org/index.php
This small nonprofit creates photo-text exhibits that are designed to “help reduce prejudice, stereotyping, and harassment of all people who are perceived to be ‘different’ from the ‘norm.’” Two of its exhibits are “Nothing to Hide,” which features photographs and interviews with families whose lives are affected by mental illness, and “The Road to Freedom,” which focuses on children, teens, and adults with the full spectrum of physical, sensory, learning, and mental disabilities. Sample photos from all of the Project’s exhibits can be viewed at the website, where arrangements to rent the exhibits or engage speakers can also be made.

Family Voices: http://www.familyvoices.org
Family Voices is a national grassroots network of families and friends that “advocates for health care services and provides information for families with children and youth with special health care needs.”

» new link »   Kya’s Krusade: http://www.kyaskrusade.org/index.php
This website is a comprehensive resource center offering support, education, and assistance to children and families affected by physical disabilities, with a special focus on Arthrogryposis and other less-publicized disabilities. Among its services are online community forums; an “Information Packet Program,” which provides resource information tailored to the needs of individual families; a listing of adaptive equipment for children with a range of disabilities; “Home Care Tips” for caring for your child; and a “Financial Assistance Program” designed to help families with expenses not covered by insurance.

The National Association of Councils on Developmental Disabilities: http://www.nacdd.org
NACDD is the national voice of the councils on developmental disabilities, which are located in every U.S. state and territory. Its purpose is to support councils in implementing the Developmental Disabilities Assistance and Bill of Rights Act and in promoting the interests and rights of people with developmental disabilities and their families.

National Dissemination Center for Children with Disabilities: http://www.nichcy.org
NICHCY is funded by the Office of Special Education Programs (OSEP) at the U.S. Department of Education to connect the public with resources concerning infants, toddlers, children, and youth who have disabilities.

Partners for Youth with Disabilities: http://www.pyd.org
PYD provides one-to-one and group mentoring programs in which adults with disabilities act as positive role models and give support, understanding, and guidance to youth with similar disabilities.

Special Needs Advocate for Parents: http://www.snapinfo.org
Educational workshops, telephone and online support, and assistance with special needs estate planning are among the many services SNAP offers to parents of children with special needs.

Last updated May 2008