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2016 Top-Rated Nonprofit

Worldwide Syringomyelia & Chiari Task Force Inc.

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Nonprofit Overview

Causes: Alliances & Advocacy, Arts & Culture, Health, Voluntary Health Associations & Medical Disciplines

Mission: Educate the world about the disease Syringomyelia and Chiari Malformation. Our focus is to provide updated education to medical professionals of all specialties to improve direct medical care for individuals living with these diseases.

Results: We were instrumental in the passage of over 25 proclamations from the 50 states declaring Syringomyelia as a disease and recognizing it in the month of May for awareness. We provide 24 hour ongoing support to our members through our three Facebook member groups...one for members, another for families, and one for parents of children with Syringomyelia. We developed the first advocacy toolkit for Syringomyelia for members to use when they go to appointments. We are piloting a Model of Care for Syringomyelia and will be working on developing this further to decrease morbidity/mortality and save lives! We just launched the first Chiari Model of Care for advocacy at doctor's appointments. We are working on launching the first worldwide natural history study and registry for Syringomyelia and Chiari as well. We are a patient-centered organization and we are strong advocates! We are Guidestar Gold members and we are Amazon Smile participants!

Target demographics: Men, women, children and canines of all breeds bravely battling the disease Syringomyelia; and Chiari Malformation all over the world!

Direct beneficiaries per year: Thousands of men, women, and children with a diagnosis of Syringomyelia and Chiari by establishing educational nurse led initiatives to provide updated education about Syringomyelia and Chiari to medical professionals of all specialties, new educational materials to members by social media, and provided a voice for members by establishing a sharing platform for them to share their journey with the diseases to increase public awareness . We established a social media teaching video about Syringomyelia and Chiari as well as developed the first model of care for Syringomyelia to share as an advocacy tool at medical appointments to aid in understanding of the disease. We are increasing understanding about canine Syringomyelia and Chiari through social media and sharing of stories.

Geographic areas served: Georgia with worldwide outreach.

Programs: Specifics of Syringomyelia & Chiari Project to further identify complications of Syringomyelia and Chiari, WSCTF Syringomyelia & Chiari Worldwide Registry, Durable Medical Equipment & Prescription Gift Card Assistance Programs to qualified individuals with a diagnosis of SM and CM (as funds are available) , and our nurse led education/advocacy programs to increase understanding across all medical disciplines about Syringomyelia and Chiari; to improve direct patient care, address unmet needs, and bridge existing gaps by providing resources to care providers.

Community Stories

15 Stories from Volunteers, Donors & Supporters

1 Joe V.

General Member of the Public

Rating: 5

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!

2 Jessica305

General Member of the Public

Rating: 5

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!

1

Client Served

Rating: 5

This website has been very beneficial to me and family in helping me dealing with Syringomyelia and Chiari.

1 Kari24

Client Served

Rating: 5

Very informative! Great resource for newly diagnosed. So happy to have this wonderful group advocating for all of us.

1

Client Served

Rating: 5

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!!!

2

Donor

Rating: 5

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.

3

Client Served

Rating: 5

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.

2 Michelle391

General Member of the Public

Rating: 5

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.

3 Maureen59

General Member of the Public

Rating: 5

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

2 Angela176

Client Served

Rating: 5

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.

2 Chris236

General Member of the Public

Rating: 5

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.

4

General Member of the Public

Rating: 5

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!!

4 Angie83

General Member of the Public

Rating: 5

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.

4 Lisa585

General Member of the Public

Rating: 5

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.

4 Jennifer596

Client Served

Rating: 5

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