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Useful Websites

(Pardon our dust! We're currently revising the page to bring you more resources. Thank you, and have a wonderful day.~Administration)
Useful Websites

Web Resources

Accessible Outdoors
The Division of State Parks and Recreation's Universal Access Program

Boundless Playgrounds®

Adaptive/Assistive Technology
Toy Guide for Differently-abled

Lekotek Online
The country's central source on toys and play for children with special needs

Texthelp Systems Inc
is the worldwide leader of literacy software solutions

Clothing for Physically Disabled Youth

Wheelchairs for children

Assistive technology solutions

Assistive/Adaptive technology

Camps and Programs for Kids

Camp Korey
Camp Korey in Seattle WA offers a free summer camp week for children with mitochondrial disease
Dream Street Foundation
Dream Street provides camping programs for children with chronic and life-threatening illnesses

Hole in the Wall Gang Camp
The Hole in the Wall Gang Camp provides year-round activities for young cancer patients and other seriously ill children (and for their siblings), both at camp and in their own communities


Disability Information


Disability Resources

www.familyvillage.wisc.edu/index.html Welcome to the Family Village! We are a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.
 
www.ucp.org United Cerebral Palsy (check "one-stop resource guide" state lists)
 
www.makoa.org Clearinghouse site created and maintained by a man who has spastic quad and writes with AAC (sip/puff, mouthpiece pointer, voice recognition, eye gaze. Extensive site!
 
http://www.icdri.org/resource_page.htm List of page after page of every resource imaginable for people with disabilities and health care needs in the US, UK, Canada, and more
 
http://www.truelocal.com/ Type in "community Services, "Disability Services," a specific disability, etc. and your state for a comprehensive list of available services.
 
http://www.moddrc.org/sp_dis_search.php Missouri resource clearinghouse, easy to search for national resources by disability and resource category.
 
http://www.patientadvocate.org/report.php The National Financial Resources Guidebook for Patients
 
www.primaryimmune.org/resources/resources.htm Immune Deficiency Foundation's site; lots of info about immune def. but also has links to resources: education, advocacy, financial assistance and health insurance, gener health, genetics, and more!
 
www.healthfinder.gov links to specific disability sites
 
www.disabilityinfo.gov links to federal and state resources; housing, health care, energy, education, employment, etc.
 

Education

www.nichcy.org We serve the nation as a central source of information on:
· disabilities in infants, toddlers, children, and youth,
· IDEA, which is the law authorizing special education,
· No Child Left Behind (as it relates to children with disabilities), and
· research-based information on effective educational practices.
 
www.yellowpagesforkids.com Wrightslaw info listing, can pull up education and disability information by state

Employment

http://janweb.icdi.wvu.edu The Job Accommodation Network, a service of the President's Committee on Employment of People with Disabilities, brings together information from many sources about practical steps employers can take to make accommodations for the functional limitations of employees and applicants with disabilities. JAN consultants provide technical details and assistance with accommodations and the implementation of products and procedures in the workplace. Callers should be prepared to explain the specific problem and job circumstances. Brochures, printed materials, and a newsletter are available free of charge.
www.gettinghired.com Online resources for workers with disabilities
www.hireds.com Employment assistance and disability accommodation info

Financial Assistance

Financial Assistance Links www.ncsd.org/Link/finhelp.htm

G-tubes & IV

Oley Foundation
provides information and psycho-social support to consumers of home parenteral (IV) and enteral (Tube-fed) nutrition (homePEN)

Kids with Tubes
Support for parents and caregivers of tube-fed children

Hospice/End-of-Life Issues

Children's Hospice International

Compassionate Friends, Inc.
Compassionate Friends, Inc., is a nationwide nonprofit self-help organization offering support to bereaved parents and siblings after the death of a child

Legal

Disability Rights Commission
www.drc-gb.org/default.aspx

Pro Bono Help in All States
www.ptla.org/links/services.htm

Magazines

Resources for parents of children with disabilities
www.ComplexChild.com
Complex Child is a monthly online magazine written primarily by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.
www.eparent.com Online archives of Exceptional Parent magazine. The newer issues require a subscription for access, but back issues can be viewed and printed for free. Includes an extensive annual resource directory
http://quest.mda.org The official magazine of the Muscular Dystrophy Association. Mitochondrial Disease is one of the neuromuscular diseases covered by the MDA "umbrella," which means that children and adults with a Mito diagnosis are eligible for MDA services, including home delivery of Quest magazine. Current and back issues are available online and are easy to search.
http://parentingspecialneeds.org Our mission is to provide parents of special needs children, of all ages and stages of life, both information and inspiration. Through Parenting Special Needs Online Magazine, we've created a world that provides practical tips, shares life's lessons, tackles the challenges and celebrates the joys, of one of life's greatest gifts.
 

Mitochondrial Disease Organizations and Information


Online Web Pages

Free, personal, private Web pages that help family and friends communicate when someone is facing illness

www.Caringbridge.org
www.Carepages.com

Parenting

MUMS
National Parent to Parent Network is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition

For Parents of children with special needs
www.projectprompt.com

A new way of thinking
www.disabilityisnatural.com

Social Security

Social Security
www.social-security-disability-claims.org

Social Security, Disability and SSI answers
www.disabilitysecrets.com

Support

Bandaides and Blackboards
about growing up with medical problems

Brave Kids
Brave Kids works to broaden the support and resources available for children who have chronic, life-threatening illnesses or disabilities

Starlight Starbright Foundation
The Starlight Starbright Foundation creates projects that are designed to help seriously ill children and adolescents cope with the psychosocial and medical challenges they face

Sunshine Foundation
The Sunshine Foundation grants dreams for seriously ill, challenged, and abused children

Chai Lifeline
Chai Lifeline is a nonprofit Jewish organization that provides support service programs to children and their families in crisis

Children's Hopes & Dreams Foundation

Eli's Angels
Our Goal is to mail literature to children diagnosed with Leigh's syndrome and other mitochondrial or metabolic disorders

Therapies/Treatment/Pharmacies

America's Compounding Center
History of working with mitochondrial disease patients to compound the "mito cocktail" and ship anywhere in the U.S. Insurance accepted.
Acton Pharmacy
Metro-Boston pharmacy dedicated to customer service and provider of compounded medications for mito patients, including CoQ10, l-carnitine, etc.
Solace Nutrition
Provider of medical food products to help patients with primary mitochondrial disorders, including Cyto-Q and Cytotine.
Horse Power
Article about equine therapy
Sirtris Pharma, a GSK company

Travel

Ronald McDonald Houses
provide a home-away-from-home for the families of seriously ill children who are receiving treatment at nearby hospitals Air Care Alliance
AirLife Line
Air Mercy
American Airlines
Miles for Kids in Need Angel Flight America
Passengers with Disabilities (air travel)

Articles or Personal Web Stories

 

Useful Websites

Web Resources

Accessible Outdoors
The Division of State Parks and Recreation's Universal Access Program

Boundless Playgrounds®

Lekotek Online
The country's central source on toys and play for children with special needs

Texthelp Systems Inc
is the worldwide leader of literacy software solutions

Wheelchairs for children

Assistive technology solutions

Assistive/Adaptive technology


Camps and Programs for Kids

Dream Street Foundation
Dream Street provides camping programs for children with chronic and life-threatening illnesses

Hole in the Wall Gang Camp
The Hole in the Wall Gang Camp provides year-round activities for young cancer patients and other seriously ill children (and for their siblings), both at camp and in their own communities

The Silver Lining Foundation
The Silver Lining Foundation brings children who have cancer and other life-threatening illnesses to a safe haven in Aspen, Colorado- 1 week camp

www.mda.org/clinics/camp Muscular Dystrophy Association Summer Camp Program, a large network of camps nationwide; many camps are equipped to care for children with complex medical needs, including mechanical ventilation.

www.easterseals.com/site/PageServer?pagename=ntl_camping_and_recreation Easter Seals Camps general information fact sheet and camp directory

www.campsunshine.org A camp in Maine that offers year-round programming for children with disabilities or chronic illnesses and their families.  Camp Sunshine also offers "satellite" programs in Wisconsin and Arizona.

www.dmoz.org/Recreation/Camps/Special_Needs A list of camps in Canada and the US, brief descriptions of the programs offered and the types of disabilities and health care needs that the camp is able to accommodate. Some camps offer family camp programs as well as bereavement support.

www.ncpad.org/fun/fact_sheet.php?sheet=88 The National Center on Physical Activity and Disability; an extremely useful resource to guide you through the process of finding a camp that best meets your child's needs. 


Cooling Vest Providers

Heat Relief Depot This company offers a discount to any customer who submits a note from a medical professional stating that the products are purchased for medical reasons. They do make children's phase change cooling vests per special order.  Several years ago, they were willing to make a vest for a 20lb toddler.  Call for more information.

 MScooling  This site offers all three vest styles in sizes that range from x-small (20" length from shoulder to waist and 33" torso circ. At the widest point) to xxx-large (25"L, 51"circ)  

 Tuff Rhino  Offers all three vest styles in a variety of sizes

Texas Cool Vest Phase change vest that is adjustable to fit from 6 y.o. child through small adult

Stacool Vest  Phase change vest in 2 children's sizes, $200+

North American Pride  This company sells a variety of styles and vest sizes; this link leads to an evaporative cooling vest for children

For more information regarding cooling vest styles, articles regarding the usefulness of cooling vests by individuals with temperature dysregulation, and potential sources of financial assistance, please refer to: http://www.mitoaction.org/red-tape/keeping-your-cool-cooling-vest-types-sources-financial-assistance


Disability Information

ADA Portal

Disability rights education & defense fund

Cornucopia of Disability Information

Consortium for Citizens with Disabilities

DisabilityInfo.gov

National Council on Disability

National Organization on Disability


Disability Resources

www.disabilityresources.org

www.familyvillage.wisc.edu/index.html

  Welcome to the Family Village! We are a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.

 

www.ucp.org   United Cerebral Palsy (check "one-stop resource guide" state lists)

 

www.makoa.org     Clearinghouse site created and maintained by a man who has spastic quad and writes with AAC (sip/puff, mouthpiece pointer, voice recognition, eye gaze.  Extensive site!

 

http://www.icdri.org/resource_page.htm  List of page after page of every resource imaginable for people with disabilities and health care needs in the US, UK, Canada, and more

 

http://www.truelocal.com/  Type in "community Services, "Disability Services," a specific disability, etc. and your state for a comprehensive list of available services.    

 

http://www.moddrc.org/sp_dis_search.php  Missouri resource clearinghouse, easy to search for national resources by disability and resource category.   

 

http://www.patientadvocate.org/report.php   The National Financial Resources Guidebook for Patients

 

www.primaryimmune.org/resources/resources.htm  Immune Deficiency Foundation's site; lots of info about immune def. but also has links to resources: education, advocacy, financial assistance and health insurance, gener health, genetics, and more!

 

www.healthfinder.gov links to specific disability sites

 

www.disabilityinfo.gov links to federal and state resources; housing, health care, energy, education, employment, etc.

 


Education

Toolkit from the office of Special Education

National Center for Learning Disabilities

Accredited Online Colleges and Disability Education

National Information Center for Children and Youth With Disabilities

Office of Special Education and Rehab

Association of Higher Education and Disability

Stop Bullying Now


 Employment

Office of Disability Employment Office


 Financial Assistance

Financial Assistance Links www.ncsd.org/Link/finhelp.htm


G-tubes and IVs

Oley Foundation
provides information and psycho-social support to consumers of home parenteral (IV) and enteral (Tube-fed) nutrition (homePEN)

Kids with Tubes
Support for parents and caregivers of tube-fed children

Are you having difficulty paying for enteral formula or nutrition supplements?  Try this link: http://www.mitoaction.org/red-tape/paying-prescription-formula-thinking-outside-can-part-1


Hopsice/End of Life Issues

Children's Hospice International

 www.babysteps.com 

"The BabySteps Children's Fund is a non-profit organization offering information and support to bereaved parents and children suffering the loss of a child. BabySteps is named after the baby steps that form thlong and difficult road to recovery from the loss of a child."

www.alivealone.org
Alive Alone is a non-profit organization that publishes a bimonthly newsletter for bereaved parents now childless and networks parents with no surviving children. 

Compassionate Friends, Inc.
Compassionate Friends, Inc., is a nationwide nonprofit self-help organization offering support to bereaved parents and siblings after the death of a child

 


Legal

Disability Rights Commission
www.drc-gb.org/default.aspx

Pro Bono Help in All States
www.ptla.org/links/services.htm


Magazines

www.complexchild.com  Monthly e-zine for parents of children with chronic illnesses and disabilities.

 

www.eparent.com  Online archives of Exceptional Parent magazine.  The newer issues require a subscription for access, but back issues can be viewed and printed for free.  Includes an extensive annual resource directory

http://www.parentingspecialneeds.org


Mitochondrial Disease Organizations and Information

Miracles for Mito

Miracles for Mito’s mission is to ensure that no individual or family has to be alone while trying to understand a complicated mitochondrial diagnosis. Our mission is to improve the resources and information available to individuals and families who are coping with Mitochondrial Disease in the Rocky Mountain Region.

The United Mitochondrial Disease Foundation (UMDF)

The Muscular Dystrophy Association
Mitochondrial is one of the neuromuscular diseases served by the MDA
The Mitochondria Research Society

National Organization for Rare Disorders

Mitochondria Research Portal

Wish Upon A Cure
David P. Campbell Foundation for Pediatric Mitochondrial Disease Research

Rebecca's Guide, Inc.

The Genesis Fund

The Neuromuscular Disease Center
good Mitochondria diagrams


Resources Online Web Pages

Free, personal, private Web pages that help family and friends communicate when someone is facing illness

www.Caringbridge.org
www.Carepages.com

 


Parenting

MUMS
National Parent to Parent Network is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition

For Parents of children with special needs
www.projectprompt.com

A new way of thinking
www.disabilityisnatural.com

www.childrenwithspecialneeds.com    Nice section to download PECS icons, as well as general and specific disability info

 

www.lydc.org  Loving Your Disabled Child;  CA-based organization that has an extensive links section    

www.childrensdisabilities.info  Articles and resources empowering parents of children with disabilities, chronic health issues, and other special needs

 

www.nathanielshope.org/pages/314.asp  Online and some face-to-face programming to provide emotional and spiritual support to children with chronic illnesses and disabilities and their families.  Website has an extensive resource section, particularly resources related to recreation such as camps

www.our-kids.org  Provides info and support for children with special needs and their families/caregivers.   Searchable databank for information and referral, financial, emotional, spiritual support.

 

www.bravekids.org  Bravekids.org helps children with disabilities, chronic, life threatening illnesses and special needs by providing thousands of resources & medical information on childhood conditions, plus message boards to connect children and parents to others sharing similar challenges.


Social Security

www.ssa.gov;

Social Security
www.social-security-disability-claims.org

Social Security, Disability and SSI answers
www.disabilitysecrets.com

   http://disabilityblogger.blogspot.com.)


Support

Bandaides and Blackboards
about growing up with medical problems

Brave Kids
Brave Kids works to broaden the support and resources available for children who have chronic, life-threatening illnesses or disabilities

Starlight Starbright Foundation
The Starlight Starbright Foundation creates projects that are designed to help seriously ill children and adolescents cope with the psychosocial and medical challenges they face

Sunshine Foundation
The Sunshine Foundation grants dreams for seriously ill, challenged, and abused children

Chai Lifeline
Chai Lifeline is a nonprofit Jewish organization that provides support service programs to children and their families in crisis

Children's Hopes & Dreams Foundation

Eli's Angels
Our Goal is to mail literature to children diagnosed with Leigh's syndrome and other mitochondrial or metabolic disorders


Therapies

Horse Power
Article about equine therapy


Travel

Ronald McDonald Houses
provide a home-away-from-home for the families of seriously ill children who are receiving treatment at nearby hospitals Air Care Alliance
AirLife Line
Air Mercy
American Airlines
Miles for Kids in Need Angel Flight America
Passengers with Disabilities (air travel)


Articles or Personal Web Stories

Heartbeats for MitoAnn, a Mito mom, writes from the heart www.heartbeatsformito.org