When I was diagnosed with syringomyelia I panicked as I had never heard of it, I googled it and read an article which said the lifespan was around 47,i became a wreck feeling I only had 3 years to live.I decided to pluck up the courage to look on Facebook and came across this amazing group, with the help of Beth ngyen and those integrating made me realise that yes it can be a fight in all senses from pain to finding a good doctor and neuro that understands, yes I'm still without a neuro but without this group and website I would be lost
An amazing site with toolkits and information that can help sufferers who struggle when specialists don't understand the disease,and always there for you if you have a question.
This organization has helped me through the hardest part of my life to date. It gives all of us hope that one done there will be a cure for this debilitating condition.
I’ve been with this group since the beginning. Beth has helped us so much with her dedication to helping us get the care we need and DESERVE.
This organization has given me hope. I have learned so much just from reading the articles, and talking with people in the Facebook group. Beth Nguyen is fantastic! She is always helpful even when she is feeling badly. I am thankful to have found this organization. Thank you for all you do!
This is such a fantastic group to be apart of! As someone going through all of these conditions, it's refreshing to chat with knowledgeable, caring people that actually listen. Thank you so very much!
This website has been very beneficial to me and family in helping me dealing with Syringomyelia and Chiari.
Very informative! Great resource for newly diagnosed. So happy to have this wonderful group advocating for all of us.
The most amazing and proactive advocacy and support group I've ever been involved with in my life. I've got Syringomyelia, Tethered Cord Syndrome, Disc Degenerative Disease and a life time of rare neurological diseases and disorders all related to Syringomyelia. This group truly is the very best in education , support and ways to advocate for those of us with this highly rare disease. What a True Blessing!!!
The inception of this website was at an enormous personal cost to a woman I have never met, but feel she has saved my life, and those of others, with her efforts in establishing this website and all the others: thank you Beth Nyugen! She has picked up the phone more than once and called me out of the clear blue. . . not much of a "cyberspace" person, but this site, the information, the dedication and true listening/caring ability is like no other site I've ever heard of for anything. Beth is a true blessing with all her efforts, this website being only one. It is awesome and has taken the "hopelessness" out of my life.
If it wasn't for this helpful sight I wouldn't have no where to turn. As most Dr's and nurses don't understand this rare disease.
Beth has helped me time after time. She provides great information that has helped me and my doctors educational information. She helped with getting Syringomyelia month in the state of NH. She is also a wonderful friend and teaches me new things all the time. Thank you Beth and staff
I had a great deal of questions about my disease (syringomyelia). Through this nonprofit group I have recieved emotional support, a model of care, and a wealth of information. The group founder is battling syringomyelia herself, so she knows and fully understands the affect SM can have on a persons life. She has taken her time to personally speak with me regarding questions and concerns I had in preparation for an upcoming doctors visit.
This non-profit has worked tirelessly to spread the word about Syringomyelia and Chiari.
Information is accurate and updated when necessary. Supported by a Medical Advisory Board.
I have never felt so connected or loved as I have from this site!! I have built lasting relantionships and gained medical information beyond measure!!
This organization has done the legwork and put together very useful information packets that I have taken to my doctors. The packets help educate health professionals about my rare disease so that they are better able to understand and help me.
Beth has worked tirelessly to help others who have this rare disorder, in spite of suffering from its debilitating effects herself.
I have syringomyelia and Beth has helped me by providing information that has helped me and my family. Beth is doing a brilliant job with this role.
My 9 year old son has idiopathic Syringomyelia and this organization has been so helpful. I love Beth's passion to help spread the word and help others