Welcome to MyMyelitis.
We're grateful you're here!
MyMyelitis seeks to provide a trusted learning environment for those suffering from rare neuroimmune conditions. We are here to help people at all stages of their journey make progress towards recovery. Whether you're newly diagnosed or have been living with the condition for a while, we're here for you.
Meet the Man Behind It All
Hey everyone! Scott here. I'm a young man who was thrust into the medical world without warning. Like so many others who were diagnosed with a rare neurological condition - I was forced to adapt quickly to keep my life on track.
I graduated from university with an accounting degree and started my professional career working within the National Health Service (NHS) in Financial Management. I was studying to become a chartered accountant and everything was going well - but there are some parts of life we can't control.
At the beginning of my exam period, I noticed a small numb spot appear on my lower back. As the week continued, this area expanded around my waist, up the side of my body and across my chest.
On the fourth day, I had pins and needles in both legs, was unable to go to the toilet and the strength in my lower body was beginning to fade. I was then rushed to hospital after visiting my doctor as he did not know what was happening.
Scott Tarpey - Founder of MyMyelitis
How MyMyelitis Began
- I was a normal healthy man until March 2020 when I ended up in hospital after losing the strength and sensation in the lower half of my body.
- After being diagnosed with Transverse Myelitis my diagnosis was changed to MOG Antibody Disease after doctors found MOG antibodies in my blood. (Read My Story here).
- Whist recovering from the attack, I decided to research more about both conditions to fully understand what had happened to me.
- Later that year I founded MyMyelitis, originally as a blog to keep myself accountable and to track my own recovery from MOGAD. However this later changed to also sharing useful information to others diagnosed with the disease.
- After I began posting more information about the condition and helpful resources aimed at those who were also suffering, the website began to gain traction with new visitors every day.
- As my journey continued, I was introduced to other individuals in the MOG community who also wanted to improve their own lives and also share information with others.
- From healthcare professionals involved in research to patient advocates for the condition, MyMyelitis began to build relationships and networks with others.
- The more I spoke with others, the more I learned for myself to educate others further. I was also invited to opportunities such as collaborations and research initiatives involved in understanding MOGAD more.
- As the MOGAD community continues to grow and evolve, the MyMyelitis story is far from over. In fact, it has only just begun.
Our Mission, Vision and Core Values
We're proud to be a community driven company in the service of others. We want to share our exciting mission, vision and core values with you as a commitment and a means to hold our work accountable.
A mission is the reason why something exists and what purpose it serves. All of our work is guided by this empowering statement.
Our Mission - To improve the lives of people with MOG Antibody Disease and related neurological conditions around the world.
A vision describes what we want to achieve in the long-term. Our vision is created by our mission
Our Vision - MyMyelitis is a trusted and recognised name within the MOGAD and wider neuroimmune condition community. This community is thriving with both individuals and companies from across the globe collaborating to raise awareness and further research into the condition.
MyMyelitis advocates for and empowers those diagnosed with MOGAD to take action and manage their condition. Providing educational content, participating in wider community events and promoting better ways of managing the condition so those suffering can live their best lives.
MyMyelitis also partners with other experts within the community to collaborate and develop useful initiatives which contribute towards our mission.
Core values are the main beliefs of our organisation. They determine the way we go about our activities and how we engage with those in the MOGAD community and beyond. These values also guide us in our everyday decisions and help us to set a high standard of work ethics.
Our Core Values -
All our work focuses around putting those diagnosed with neuroimmune conditions first.
We strive to educate and inform those within the community whilst being diligent of misinformation.
We encourage those dealing with conditions to choose health and take control of their diagnosis.
No matter how hard the task is we endeavour to try our best to accomplish our mission.
Our Trusted Partners
Our partners within the MOGAD community make our work better every step of the way.
The MOG Project is a non-profit organisation located in the USA who are devoted to raising awareness, educating doctors, patients and caregivers, advancing research through expert collaboration and fundraising by providing support and advocacy for the MOG Antibody Disease community.
It's not About Us, it's About You!
You are the reason we exist! Whether you're a patient who is newly diagnosed with a neuroimmune condition or someone who has been suffering for a while, we will do our best to help you. We appreciate your support and we're here to support you for the long haul.
We mostly communicate with our community of like-minded individuals through our newsletter. If you have not already joined we would love you to join us. It is always free, keeps you updated with all the exclusive content and you can unsubscribe anytime. See you there!
Join Our Community
Our email list is full of value and tailored to your interests wherever possible and always free.