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Resources for Those with Chiari Malformation, Syringomyelia and Related Disorders

Those with Chiari malformation, syringomyelia and related disorders sometimes need help with tasks such as applying for social security benefits. The following is a collection of resources and valuable information that you may find helpful. Please consult a healthcare provider or legal professional before following any medical or legal advice found on these and any other websites.

AGING

CHRONIC PAIN

DISABILITY INFORMATION

EDUCATION

  • Accredited Online Colleges and Disability Education– As with the general population, the level of education and training after high school that a person with disabilities receives is a key factor in their ability to find work. This site contains information on finding an accredited online college.
  • College Education– Search online for accredited schools and scholarships 
  • Scholarships for Students with Disabilities – Though the price of obtaining a postsecondary education can be steep, both traditional and online college degrees should be accessible to everyone.
  • com– Over 500 courses from the world’s leading universities – right at your fingertips.
  • Accredited Schools Online– Hundreds of schools with full accreditation make quality online learning a reality for millions
  • Resources for College Students– Includes actual resources that students with disabilities can utilize to ensure a pleasant educational experience.
  • Become an Art Therapist– Got an artistic side and want to give back to the Chiari, syringomyelia and related disorder community? Art therapists seek to treat the physical and emotional difficulties caused by living with these disorders, among many other stressful situations.

EPILEPSY (SEIZURES)

  • Epilepsy Foundation– Trusted, family-led organization that works to accelerate research and educate individuals about epilepsy, what triggers seizures and much more.

GENETICS INFORMATION

INSURANCE INFORMATION

MEDICAL APPOINTMENTS

  • Limitless Medical Logs– All-in-one medical logs for patients battling a health condition to help track their pain and symptoms, daily. The logs will provide daily, accurate tracking to enhance your dialogue with a physician to better build a treatment plan. Developed from personal experience by a Chiari patient, the goal of the company is to help every person take full control of their health.

MEDICAL EQUIPMENT/HOME ADAPTATION

MEDICATION

  • DrugWatch– Comprehensive web site database featuring extensive information about thousands of different medications and drugs currently on the market or previously available worldwide.
  • Prescription Drug Dependency– If you or your loved one is struggling with a dependency to medication, please visit this resource. *Note: This is a local Staten Island, NY (and surrounding areas) resource for those struggling with addiction. For other local resources such as this, please send an inquiry to info@bobbyjonescsfinfo.org.
  • Drug Rehab Connections– We are a starting point to finding individuals and families help that are battling addiction
  • OxyContin Withdrawal– When a person stops abusing OxyContin, uncomfortable withdrawal symptoms like nausea and depression can set in, but help is available

NEUROLOGY

  • Neurology Now, an official publication of the American Academy of Neurology (AAN), provides patients and their caregivers with credible, up-to-the-minute, balanced coverage of the latest advances in neurology research and treatment.

TRAVEL

  • Ultimate Guide to Air Travel with a Disability– Tips and advice on how to make navigating airports and air travel a more enjoyable experience.
  • Airports and Special Needs Travel: A Complete Guide– When traveling by plane, a good part of your trip is spent at airports. In fact, on many trips you spend more time at an airport than you do flying. When traveling with a child who has special needs every step you take needs to be very carefully planned.
  • Traveling with a Medical Condition– The essential guide to traveling with a medical condition
  • CheapOair Traveling with Disabilities– Resources for children and adults with physical disabilities who are going to be traveling. (Thank you to Ms. Phillips’ kids for finding such a wonderful resource for people with disabilities!)
  • Patient AirLift Services– Patient AirLift Services (PALS) will arrange FREE air transportation for individuals in need of medical diagnosis, treatment of follow-up. Please call to see if you qualify for a flight (631-694-7257) or visit our website.
  • Patient Airlift Services (PALS) Newsletter
  • Access-Able Travel Source– Provides information about: disabled travel, wheelchair travel, disabled holidays, disability travel, handicapped travel, accessible travel, vacations for disabled, and mature travel.
  • Disabled Travel Network– Accessible travel resources for wheelchair users and mobility-impaired people
  • Society for Accessible Travel & Hospitality– The Society for Accessible Travel & Hospitality (SATH), founded in 1976, is an educational nonprofit membership organization whose mission is to raise awareness of the needs of all travelers with disabilities, remove physical and attitudinal barriers to free access and expand travel opportunities in the United States and abroad.

Links Disclaimer: Links of interest to other websites from this location are provided as an added value by the Bobby Jones Chiari & Syringomyelia Foundation, Inc. By accessing the links from this site, you will be leaving Bobby Jones CSF’s web site.  Although we have reviewed the information on these sites prior to creating the links, we are not responsible for the content of the sites going forward. Information on these website pages may become dated or change without notice, and we do not represent or warrant the information contained on these linked pages as complete or accurate.  Please be advised that you will no longer be subject to, or under the protection of, the privacy and security policies of Bobby Jones CSF’s website.  We encourage you to read and evaluate the privacy and security policies on the site you are entering which may be different from those of Bobby Jones CSF, Inc.

 

Revised: 9/2019