Purpose of this website

Living with Orthostatic Tremor (OT) presents numerous challenges that are often difficult to articulate to others, including family and friends, who are affected by the limitations that OT imposes, too; but also to healthcare professionals such as physicians and physiotherapists.

To address this, I have created a video and a one-pager titled “OT at a Glance” to help make these challenges more understandable. Since OT is a rare condition that even many neurologists are unfamiliar with, it is often misdiagnosed or underdiagnosed. It can take years for individuals to receive the correct diagnosis. By increasing awareness of OT among physicians, physiotherapists, and neurologists, hopefully the diagnostic process for others can be expedited.

Another wish of mine is to promote basic research on OT and to develop solutions that can reduce or stop the tremor. I am a strong advocate for collaboration, especially when resources are limited. I believe that it would be highly beneficial for researchers to join forces and coordinate their efforts. This way, the scarce resources available worldwide can be used optimally to better understand OT and find a cure. Having more than 20 years experience in corporate communications for a multinational company, I would be happy to drive a crowdfunding campaign for a specific research project. If anyone has good contacts in the neurology research world or has any leads how to go about it, please contact me here.