SAAC is the ONLY syringomyelia specific non profit organization. Syringomyelia is one of the least studied medical diagnoses on earth with little treatment options. At SAAC, we are advocates comprised of experts from a wide variety of medical/lifestyle disciplines, determined to get those diagnosed access to better care.

While we love and support our medical non profit community, we see a need for change in how organizations advocate. At SAAC, we will call out those who blatantly mistreat, misdiagnose, or simply don’t listen to their patients. We need more accountability within the medical industry. We will be the Robin Hood of non profits. Resources will be maximized with no “fluff” spending, only financial decisions that make sense and benefit the community we fight for. Additionally, while syringomyelia is a single diagnosis, we treat it as a whole body issue. Meaning, any symptoms you may be experiencing may be directly related to the syrinx, and is warranted to be further evaluated as such. Lastly, rather than focusing solely on research, while important, people want answers & resources NOW that can positively impact their day to day quality of life. Research can take a while, when properly done. We want to make sure in the meantime you are getting the most out of your life with tools that set you up for success. Refer to our “3 Phase Initiative” for more information as to what exactly this means.

Donations go towards numerous causes within SAAC, to include things such as research and development, events, grants for special care, ad development, and more that directly influences the advocacy and awareness of syringomyelia. We will be radically transparent with regular financial updates on our pages to include any funds used for salaries of employees in the future (Something many non profits don’t routinely discuss and disclose!). Please also review our “3 Phase Initiative” section for more specific information.

SAAC is made up of a variety of specialists who have extensive experience in management of many medical conditions. While SAAC doesn't offer direct in office/clinic care, we regularly use our social media and blogs to keep those interested in up to date methods on how to better manage your symptoms and what providers we personally approve to give the best quality of care. We also plan on having grant programs for special treatments.

We are a rapidly growing organization and welcome any help. This can be as simple as just sharing our post from our social media, signing up as an event/fundraiser day volunteer, or reaching out to use to collaborate on ideas. Please inquire further via our email for any specific ways you want to be involved.