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Lekotek Online: The country's central source on toys and play for children with special needs
Camps and Programs for Mito Kids
Dream Street Foundation: Dream Street provides camping programs for children with chronic and life-threatening illnesses
United Cerebral Palsy (check "one-stop resource guide" state lists)
TrueLocal.com Type in "community Services, "Disability Services," a specific disability, etc. and your state for a comprehensive list of available services.
Immune Deficiency Foundation: Has links to resources: education, advocacy, financial assistance and health insurance, gener health, genetics, and more!
A Guide to Visual Disabilities: How Colleges Help Visually Impaired Students Succeed
www.yellowpagesforkids.com: Wrightslaw info listing, can pull up education and disability information by state
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.
GettingHIred.com: Online resources for workers with disabilities
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
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
Compassionate Friends, Inc. is a nationwide nonprofit self-help organization offering support to bereaved parents and siblings after the death of a child
Alive Alone is a nonprofit organization that publishes a bimonthly newsletter for bereaved parents now childless and networks parents with no surviving children.
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.
Quest: 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.
Parenting Special Needs Magazine provides parents of special needs children, of all ages and stages of life, both information and inspiration.
Mitochondrial Disease Organizations and Information
Online Web Pages
Free, personal, private webpages that help family and friends communicate when someone is facing illness
MUMS National Parent to Parent Network is a national organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition.
Disability is Natural offers a new way of thinking.
Children with Special Needs offers a nice section to download PECS icons, as well as general and specific disability info.
Childen's Disabilities Information offers articles and resources empowering parents of children with disabilities, chronic health issues, and other special needs
Nathaniel's Hope provides online and some face-to-face programming to provide emotional and spiritual support to children with chronic illnesses and disabilities and their families.
Our Kids provides info and support for children with special needs and their families/caregivers.
BraveKids 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.
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 grants dreams for seriously ill, challenged, and abused children.
Chai Lifeline is a nonprofit Jewish organization that provides support service programs to children and their families in crisis.
ACC Apothecary has a history of working with mitochondrial disease patients to compound the "mito cocktail" and ship anywhere in the U.S. Insurance accepted.
Acton Pharmacy is a Metro-Boston pharmacy dedicated to customer service and provider of compounded medications for mito patients, including CoQ10, l-carnitine, etc.
Solace Nutrition is a provider of medical food products to help patients with primary mitochondrial disorders, including Cyto-Q and Cytotine.
Ronald McDonald Houses provide a home-away-from-home for the families of seriously ill children who are receiving treatment at nearby hospitals.
MScooling: This site offers 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)
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 CLICK HERE.