OMSLife Information

05/15/2026

One of the recent efforts has been to update our OMS WIKI manual. We have a lot of work remaining on it, but CHAPTER 1 is nearing completion.

Check it out -

If you are looking for information about Opsoclonus-Myoclonus Syndrome (OMS), you likely know of someone who is battling this disease. The patient is likely a young child, with a median age of onset between 18 to 20 months. The patient may have eyes that are shaking (opsoclonus), Shaking arms and le...

04/02/2026

Hi OMS friends.
I wanted to share a new feature we added to our website today. We have a world map showing patient numbers that we know of - by country. Check it out at www.omslifefoundation.org .
Thanks to Dusty Rose Dievendorf, Nate (the great) Kenney, and Kelsey KL Milligan for putting this together!!!

02/28/2026

On this Rare Disease Day, would you consider joining our coffee challenge? It is simple. We are asking that once a month, you skip the stop at your favorite coffee spot and donate to OMSLife Foundation. The cost is only $5.60 per month.

Share with your family and friends!

Click on the QR code or go to https://omslifefoundation.org/coffee-challenge/

02/27/2026

Tomorrow, February 28, is Rare Disease Day. Let's honor our OMS warriors by making sure everyone knows about OMS. Share your story with friends and family. Get the word out!

For more information on OMS, here are some quick resources:

OMSLife Foundation - www.omslifefoundation.org

Quick video on what to know about OMS - https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/ -video

If you or a family member were recently diagnosed with Opsoclonus Myoclonus Ataxia Syndrome (OMS / OMAS), we are here to help you. This website is designed as a guide on OMAS. If you are trying to learn more about OMAS, the content below is intended to provide some quick references to many things ab...

02/13/2026

Hi OMS families...
We have created a Canva profile picture frame for Rare Disease Day - February 28. It allows you to add the picture of your OMS warrior. Here are the steps to do it:
1. Click on the link to open the Canva template. https://www.canva.com/design/DAHBOz2ojUg/t3lmAtsg7TNCHtl4aCWcKA/edit?utm_content=DAHBOz2ojUg&utm_campaign=designshare&utm_medium=link2&utm_source=sharebutton
2. You will need to log into Canva to access the file.
3. Go to file and select create a copy
4. Go to Uploads (on the left side of the page) and upload the picture you want to put in the frame.
5. Drag and drop the picture into the frame. Double click on the picture to resize it in the frame.
6. Click share on top right corner and select download. It will download this into your downloads folder.
7. Select it as your profile picture.
See before and after pictures:

02/06/2026

Hi OMS Families...
I wanted to let you know that we have updated The OMSLife Foundation website. It has a new look and feel and is more mobile friendly. Check it out!

If you or a family member were recently diagnosed with Opsoclonus Myoclonus Ataxia Syndrome (OMS / OMAS), we are here to help you. This website is designed as a guide on OMAS. If you are trying to learn more about OMAS, the content below is intended to provide some quick references to many things ab...

12/02/2025

Today is Giving Tuesday. Your donation can help us continue our mission of uplifting OMS patients and their families through a variety of services and research.

www.omslifefoundation.org/donations