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, acquiring a mortgage, remodeling a home, or traveling. 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.
- The Brain Donor Project – Donating a brain to neuroscience research is one of th emost powerful ways an individual can contribute to the advancement of science– whether or not that person’s brain is impacted by any disease. So-called “unaffected controls” or “healthy brains” are also needed for comparative science. Learn more about the critical need for this precious resource and begin the process of becoming a brain donor at braindonorproject.org.
- Helpful Items for Chronic Pain – “Here is a list of items that I have found to assist me as I have navigated a life of chronic pain. I am passing this forward in the hopes that something on the list might also help you gain some relief or happiness. I don’t work for any of these companies, so I assure you I have no personal gain. I wish you the best in your journey!” – Ellen Icochea (Patient – Greater Metropolitan Washington Area)
- The Comprehensive Guide to Back and Neck Pain: Causes, Relief and Treatment– In this guide, we look at back pain relief, back pain treatment, and the causes behind it.
- American Chronic Pain Association– Since 1980, the ACPA has offered peer support and education in pain management skills to people with pain, family and friends, and health care professionals.
- American Academy of Pain Management– The American Academy of Pain Management (the Academy) is a non-profit organization that educates clinicians about pain and its management through an integrative interdisciplinary approach.
- Pain Management Specialists– Information on pain management for chronic back pain, pain management techniques, and pain management specialists
- A World of Information on Pain– Pain.com is a unique online resource offering the most up-to-date pain and pain management information on a variety of different topics written by medical professionals for both the consumer and healthcare specialist.
- Universal Design for Accessible Backyards – If you live with someone who has a disability, your home probably has everything you need to accommodate their auditory, visual, sensory or mobility issues indoors. But what about your garden or deck?
- Disability Accommodation Request Letter – If you need an accommodation in your living space and need to submit an official request to their landlord, this template will help you. In addition to the request letter template, the article also features a bunch of tips to help the process go as smoothly as possible, as well as covers tenant rights and what you can do if your requests aren’t taken seriously or granted.
- How to Teach Children About Disabilities and Inclusion – Teaching youth to share and accept each other’s differences is part of building an inclusive culture that shields students with disabilities from bullying.
- The Definitive Guide to Disability Inclusion in the Workplace – This guide explores the key aspects of disability in the workplace in depth, providing insight into how inclusive company policies and working styles tend to be (or tend not to be), as well as showcasing key data.
- Medicaid Long Term Care Eligibility Requirements Finder – Medicaid long term care eligibility criteria varies with the applicant, state and specific Medicaid program. Answer a few questions and receive your specific requirements.
- The Ultimate Guide to Finding and Renting Housing with Disabilities – If you or a loved one live with a disability, finding and renting the right housing can feel like an uphill battle. But there is no reason to go it alone.
- Career Guide for People with Disabilities – Everything you need to know about navigating the pathway to employment as an individual with a disability
- Disability Benefits Center– Dedicated to providing the public with information on the disability benefits process
- Social Security Application Process– We outline the basic steps of applying for Social Security Disability benefits and explain issues you may face while seeking approval of your claim
- Tax Tips for the Legally Disabled– Information from TurboTax on payments and benefits, disability tax credit, home modifications, and care expenses.
- Refinance and Mortgage Guide for People with Disabilities– To provide the most relevant and essential resources needed to navigate the myriad of red tape and sometimes rigid processes regularly associated with real estate purchases.
- Social Security and Disability Resource Center– Provides a detailed overview of how the federal disability system works (social security disability and SSI) and also provides answers to many questions that applicants typically have, but often have trouble finding answers to.
- The Invisible Disabilities Association (IDA)– Encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate.
- Americans with Disabilities Act– Your gateway to information about the Americans with Disabilities Act (ADA)
- Benefits for People with Disabilities– The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities.
- National Organization on Disability– The National Organization on Disability (NOD) is a private, non-profit organization that promotes the full participation of America’s 54 million people with disabilities in all aspects of life.
- How to Find a Disability Attorney– This information may help claimants with Chiari malformation and related disorders find an attorney.
- Disabled Facilities Grants (United Kingdom)– This website provides information for disabled persons in the UK to find grants for disability devices like stairlifts.
- Epilepsy Foundation– Trusted, family-led organization that works to accelerate research and educate individuals about epilepsy, what triggers seizures and much more.
- 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
- 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 email@example.com.
- Drug Rehab Connections– We are a starting point to finding individuals and families help that are battling addiction
- 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.
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 on 12/2022