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 toward recovery. No matter if 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! I'm Scott. I'm a young man who was thrown into the medical world without warning. Like so many others 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. I started my career in Financial Management in the National Health Service (NHS). 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 on my lower back. Over the next few days, this area expanded around my waist, side, and chest.
On the fourth day, I had pins and needles in both legs, could not go to the toilet, and the strength in my lower body was beginning to fade. I was then rushed to the hospital after visiting my doctor, as he did not know what was happening.
Scott Tarpey - Founder of MyMyelitis
How MyMyelitis Began
- I was an ordinary healthy man until March 2020, when I ended up in the hospital after losing the strength and sensation in the lower half of my body.
- After being diagnosed with Transverse Myelitis, my diagnosis changed to MOG Antibody Disease after doctors found MOG antibodies in my blood. (Read My Story here).
- While recovering from the attack, I researched both conditions to fully understand what had happened to me.
- Later that year, I founded MyMyelitis as a blog to keep myself accountable and track my recovery from MOGAD. However, this later changed to sharing helpful information with others diagnosed with the disease.
- After I began posting more information about the condition and helpful resources aimed at those suffering, the website started gaining traction with new visitors daily.
- As my journey continued, I was introduced to other individuals in the MOG community who wanted to improve their lives and 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. 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 a 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.
A vision describes what we want to achieve in the long term. Our mission creates our mission.
Our Vision: MyMyelitis is a trusted and recognised name within the MOGAD and wider neuroimmune condition community. This community is thriving, with 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 broader community events, and promoting better ways of managing the disease so those suffering can live their best lives.
MyMyelitis also partners with other experts within the community to collaborate and develop beneficial initiatives which contribute towards our mission.
Core values are the central beliefs of our organisation. They determine how we go about our activities and engage with those in the MOGAD community and beyond. These values also guide us in our everyday decisions and help us set a high work ethic standard.
Our Core Values -
All our work focuses around putting those diagnosed with MOG Antibody Disease first.
We strive to educate and inform those within the community while being diligent about misinformation.
We encourage those dealing with conditions to choose health and take control of their diagnosis.
No matter how challenging the task is, we 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 in the USA devoted to raising awareness, educating doctors, patients, and caregivers, and 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 newly diagnosed patient 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 are here to support you for the long haul.
We primarily 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!
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