Chiari and Syringomyelia
Information and Support Groups
Chiari Connection International is dedicated to bringing emotional and tangible support and understanding to the patients afflicted with Arnold Chiari Malformation and its related conditions, such as Syringomyelia and Ehlers-Danlos syndrome, as well as to providing patients and their friends and families with current, accurate information explaining ACM and its associated diagnosis, treatment and lifestyle.
The site is designed to have all resources of chiari and related disorders in one easy to read place. There are many articles, links, "The Doctors Corner" where doctors have answers all of those questions we all have not know a answer to. and much, much more data that is updated often.
Is a non-profit organization dedicated to achieving their mission : "To improve the lives of
people affected by Syringomyelia,Chiari Malformation and related disorders while we find the cure".
Their goals are to develop new treatments, improve existing treatments and find the causes as well as cures. They focus daily on awareness, to the public and the medical community, in hopes of increasing understanding of these devastating conditions.
ASAP has educational materials available, including a library of videotapes recorded at their annual conferences. ASAP offers many opportunities for peer support. They have an e-mail support group, made up of hundreds, whose lives are affected by these conditions, many of whom have devoted their lives to helping others by offering support, knowledge and the hand of friendship.
There is never a road too long when traveling with a friend.
We meet the 3rd Thursday of every quarter
Time: 11:00 – 1:00
Location: St. Joseph’s Outpatient Rehab Center – 114 W. Thomas Rd.
Our quarterly meeting includes time to visit & share before a planned speaker. We encourage friendship, lunch, movies or just coffee during the other months.
For additional information email us at azsyringochiari@cox.net .
Or call Debbie (623) 561-6906, Dianna Contreras (602) 973-4508
Look Here to Help yourself !
These sites offer many resources that you can access directly.
Just click on the ones that interest you.
American Red Cross - This site will help you locate your LOCAL American Red Cross Chapter for help. Take a look. They have a wide range of services to offer you.
National Institute of Neurological Disorders & Stroke - NINDS - learn about disorders of the brain and nervous system.
Social Security Assistance - SEVERE.net - Social Security Disability law information and resources. Includes statutes and regulation links, latest news and archives of information to help you along the road to getting approved for disability.
Benefits Checkup - Find programs for those aged 55+. These programs may cover utilities, healthcare & prescriptions and other services. Just fill out the questionnaire to find out which programs you or a family member qualify for.
Patient Advocate Foundation - Need someone to advocate for you or a family member with regard to your insurance, employer and/or creditors? They work to resolve insurance issues, debt crisis and job retention in relation to your diagnosis.
Disabled Children's Relief Fund - Provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery.
United Spinal Association - $5000 per person grant to anyone with spinal cord injury to make needed modifications to your residence for accessibility needs. You must provide documentation of the need. ANY condition causing cord dysfunction or damage qualifies someone. Membership is FREE and you can join online. The grant is listed under membership benefits here.
Independent Living Research Utilization - The ILRU (Independent Living Research Utilization) program is a national center for information, training, research, and technical assistance in independent living.
New Directions - mobilizes community-wide resources and volunteers to support the housing repair needs of elderly and disabled homeowners of low income throughout Kentucky.
Free or reduced cost medication
The Medicine Program - Free prescription medicine is available to those who qualify.
Needy Meds - An information source for those who need assistance programs designated to help those who can not afford their medicine.
RX Hope - Helps you apply for, obtain and keep track of your requests for no cost medicine.
HelpingPatients.org - Phrma - Find patient assistance programs for which you may qualify.
Partnership for Prescription Assistance - (1-888-477-2669)
The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them.
Assistance with Air Travel
Patient Travel - Charitable medical air transportation resources.
International Travel Assistance "AMR Foundation" 1.817.967.9784
Studies of Interest
Ehlers - Danlos Syndrome Study for those with connective tissue disorders
including EDS. This is NOT a chiari study. The study is titled "Clinical and Molecular Manifestations of Hereditary Connective Tissue Disorders". They are particularly interested in those with the vascular type EDS but are accepting folks all types now. The study takes place in Baltimore, Maryland at Harbor Hospital NIA-ASTRA unit on the 5th floor. The directions to the hospital can be found at www.HarborHospital.org. The phone number of the NIA unit is 410-350-3950.
Knowledge is POWER!
Help yourself get the help you need by visiting the following sites!
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