News

Our friends at SRNA (Siegel Rare Neuroimmune Association, which used to be called the Transverse Myelitis Association) in the USA are holding their annual Rare Neuro Diseases Symposium (RNDS) on line this year. ​

It's a three day event, with three concurrent tracks covering a huge variety of topics, from various perspectives. It's a great opportunity to learn and amazing value. It will use a new platform named Hopin which is sort of like Zoom, but improved for large meetings and allowing one to one networking sessions in addition to presentations. Most of the presentations are time controlled and will only last 20 minutes.  

​The cost is $20 and you can sign up by clicking here. ​ 
(The full link is:     https://wearesrna.org/event/2021-rnds )

When you or a loved one become ill with a rare neuro-inflamatory condition, everyone else in the family can be affected. Family Relationship Coaching can help your family explore the issues arising  to help develop solutions that can work for your family. Families where an adult or child is affected by TM, ADEM, NMO, MOG, AFM or ON are eligible, and a family can be defined as a group of individuals who care about and care for each other whether you are biologically related or not. The offering is supported and made affordable through the TM Society. See more here. 

​Our friends at SRNA in USA have put together a Q&A session with Dr Ben Greenberg, on the topic of vaccinations for TMers. The update covers latest announcements about Covid vaccines, the different technologies being used, what is happening next etc. Dr Greenberg also advises re flu vaccinations. The Q&A session lasts 23 minutes and can be viewed in the SRNA channel on YouTube here. 

Dr. Benjamin Greenberg is an internationally recognized expert in treating adults and children with autoimmune disorders of the central nervous system. He specializes in treating patients with transverse myelitis (TM), neuromyelitis optica (NMO, or Devic’s disease), and multiple sclerosis (MS), as well as children with TM, MS, and other conditions such as autoimmune encephalitis and acute demyelinating encephalomyelitis (ADEM).

The eventual aim is to identify the top 10 questions which researchers can draw on when they are seeking to research potential treatments for these conditions. Because this process is rigorous, funders know these research questions have been well thought out and not been looked at before.