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Useful Websites

 

Web Resources

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

Assistive technology solutions

Assistive/Adaptive technology

Boundless Playgrounds®


Camps and Programs for Mito Kids

Camp Korey

Double H Ranch

Victory Juncton

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

Hole in the Wall Gang Camp

Easter Seals Camps

Camp Sunshine

Recreation Camps: Special Needs


Disability Information

The Ultimate Section 508 Guide for Students

Disability rights education & defense fund

Cornucopia of Disability Information

National Council on Disability

National Organization on Disability

Disability Insurance


Disability Resources

www.disabilityresources.org 

United Cerebral Palsy (check "one-stop resource guide" state lists)

Disability Information and Resources 

Index of ICDRI Disability Resources 

TrueLocal.com Type in "community Services, "Disability Services," a specific disability, etc. and your state for a comprehensive list of available services.

The National Financial Resources Guidebook for Patients

Immune Deficiency Foundation: Has links to resources: education, advocacy, financial assistance and health insurance, gener health, genetics, and more!

HealthFinder.gov

Home Remodeling for People with Disabilities: What You Need to Know

Independent Living Guide


Education

 
 
 
 
 
 
 
 
 

www.yellowpagesforkids.com: Wrightslaw info listing, can pull up education and disability information by state

Understanding Cyberbullying in College


Employment

Office of Disability Employment Office

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

Employment assistance and disability accommodation info


Financial Assistance

Estate and Gift Taxes

State Laws: Estate and Probate

Wills, Trust and Estate Planning

National Association of State Planners and Councils

Society of Financial Service Professionals

The Stress-Free Guide to Selling An Inherited Home


G-tubes & IV

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

ThriveRx

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


Hospice/End-of-Life Issues

Children's Hospice International

Compassionate Friends, Inc. is a nationwide nonprofit self-help organization offering support to bereaved parents and siblings after the death of a child
 
BabySteps: The BabySteps Children's Fund is a nonprofit organization offering information and support to bereaved parents and children suffering the loss 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. 


Legal

Pro Bono Help in All States


Magazines

Resources for parents of children with disabilities
Complex Child is a monthly online magazine written primarily by parents of children with special healthcare needs and disabilities. 

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

The United Mitochondrial Disease Foundation (UMDF)

Miracles for Mito

The Muscular Dystrophy Association

National Organization for Rare Disorders

Mitochondria Research Portal 

Mito Hope & Help

Mitochondrial Research Guild

Australian Mitochondrial Disease Foundation

The Genesis Fund

The Mitochondria Research Society 

The Neuromuscular Disease Center

Wish Upon A Cure


Online Web Pages

Free, personal, private webpages 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 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.


Social Security

Social Security Disability Claims

Official Social Security Website

Social Security, Disability and SSI answers


Support

Bandaides and Blackboards

Brave Kids

Cerebral Palsy Support

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.


Therapies/Treatment/Pharmacies

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.

Edison Pharma


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

Angel Flight America


Cooling Vests  

 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.


Autism Resources

Autism Resources for Families

Sesame Street Autism Resources for Parents

Reduce the Noise: Help Loved Ones with Sensory Overload Enjoy Shopping

CDC Autism Links and Resources

Operation Autism for Military Families

Academic Accommodation Resources

Temple Grandin's Teaching Tips

Taking your Child with Autism to the Orthodontist

Estate Planning for Parents of Kids with Autism

Caring 4 Our Kids


ADHD Resources

ADHD: Talking to Your Child’s or Teen’s Teachers

Creating a Comfortable Home Environment for Children with ADHD

Managing Adult ADHD

How to Succeed in the Workplace with ADHD

ADHD Helpful Activities