Helpful Links


Dystonia Medical Research Foundation

Epilepsy Foundation

CURE Epilepsy


American Physical Therapy Association

American Occupational Therapy Association

American Speech-Language-Hearing Association (ASHA)

American Hippotherapy Association

Intensive Model of Therapy (IMOT)- Description and more information here.

Funding of Equipment:

Disabled Children’s Relief Fund-Funding resource provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery.

Fund it Forward – raises money for adaptive equipment not covered by health insurance.

The Lindsay Foundation – Named after Lindsay McMillan who passed away in 1999 the the Lindsay Foundation is dedicated to assisting families that have children who have been diagnosed with long-term catastrophic illnesses, have not reached the age of 18 years, and reside at home. Grants are awarded based on the child’s need, not the family’s income.

The M.O.R.G.A.N. Project – has been created with love BY parents of a child with special needs, FOR parents of children with special needs. -providing resources, gently used disability equipment exchange, and new bath/chairs and conference scholarships

United Healthcare Children’s Foundation – was created to improve the lives of children who need financial assistance to cover medical treatment in all 50 states.


504 and IEP Plan Information

State Resource Sheets for Disability Related Issues

Special Education & Rehabilitative Services Legislation (IDEA & The Rehabilitation Act)

Section 504 of the Rehabilitation Act of 1973

The Individual Family Service Plan (IFSP)

IEP’s versus 504 Plans

Guide to the Individualized Education Program

Legal and Advocacy


The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.

rareconnect-150x47Rare Connect is a joint collaboration between EURORDIS and NORD (the US National Organization for Rare Disorders). Rare Connect is an online social network for patients and families to connect with each other, to offer support and to share vital experiences on aspects of living with a rare disease.

GGP-Rare_logo1-150x86Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.


Insurance Claims Denials & Appeals

Dealing with denied medical insurance claims? Complex Child E-Magazine has a great article “Writing Winning Insurance Appeal Letters” – tips, etc. can be downloaded as pdf file!

How To Appeal A Health-Claim Denial – a helpful article from on an issue too many JM families deal with!

Patient Advocate Foundation (PAF)

The PAF mission is to provide effective mediation and arbitration services to assist patients w/ chronic or life-threatening illnesses with Medical Debt Crisis, Insurance Access Issues & Job Retention Issues. A good resource!

For access/approval related to IVIG

IGLiving Magazine is an online & print magazine for the IVIG community –  — Kris McFalls, Patient Advocate

External Insurance Appeals

Medical Insurance Issues? Appealing Claims? Know the contact information for the Insurance Commissioner’s Office for your state – the regulatory office for insurance – and the laws for your state.

Kaiser Family Foundation has a dedicated webpage “A Consumer’s Guide to Handling Disputes with Your Employer or Private Insurance – State-by-State External Review Programs”.  This is for information about the Appeal Process reaching the external, state level.

Other helpful Insurance Links

Connecting Kids to Insurance Coverage —

“Your Health Plan & HIPPA…Making the Law Work for You”  — it’s more than simply a privacy law —

“Top 10 Ways to Make Your Health Benefits Work for You” — a helpful link by the Employee Benefits Security Administration of the Dept. of Labor covers HIPAA, COBRA, etc.

Changes in Healthcare Law

Key provisions in health care reform went into effect recently. Do you know how the new laws will impact you & your family?

If you have a new insurance policy or purchased one on or after 09/23/2010, there are requirements to receive preventive services with no out of pocket costs. Please review the list of covered preventive services available.

Know how Changes in Healthcare law and provisions affect you —

To enhance the understanding of insurance and healthcare reform changes following the passage of the Patient Protection and Affordable Healthcare Act —

Help with Medical Bills has a webpage listing helpful web links for “Assistance with Paying for Medical Care & Procedures”, “Financial Aid for Medical Treatments”, “Assistance for Paying for Medications”, “Assistance for Insurance Premiums”.

Casey Cares Foundation Financial Aid webpage includes links to helpful resources/tools  —www.caseycaresfoundation.orgindex.cfm?page=financial-aid

NeedyMeds – NeedyMeds, a non-profit, was founded as a resource of information about patient assistance programs (PAPs) and developed into a database of PAPs, disease-based assistance, gov’t programs & other types of assistance programs.

Rx Assist – RxAssist offers a comprehensive database of patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need.

Helpful Apps

Siezure Tracker is an App that allows one to record and keep a diary of seizures.  Many families adapt it to track AHC episodes and note their characteristics.


If you have links that are valuable to your care, please share!