If you stumbled on this website/blog because you are (or know someone who is) suffering from SNUC, please read this.

The days ahead of you will be hard but don’t despair and kick the freakin’ snot out of SNUC like Kathleen did.

I’m a pragmatic guy so I’ll jump right to the point: With no (well, very little) extra effort, you can not only fight SNUC for you, but you can help others fight it. You can help research. You can help find a cure.

The team at CaBRI Med is working hard to find a cure for SNUC. If you will be undergoing surgery during your fight against SNUC, then you can help them by asking the surgeon to save SNUC tumor samples for them to use in their research. Here’s what they mention on their website:

Urgently Needed: Additional fresh frozen SNUC tumor biopsy samples

In order to draw meaningful conclusions, we need to sequence SNUC tumor samples from as many different patients as possible. It does not matter whether the cancer has been treated, but it is very helpful to have the tissue frozen immediately on collection. Anyone who is a recently diagnosed SNUC patient or a friend or relative of one, please contact us at admin@cabrimed.org

Being asked for something like this may be hard to “process” right now if you just learned about your disease, but think of it as an extra kick in the ass for SNUC. It will make no difference to you, but it may make a huge difference for someone else in the future. SNUC is a rare disease and CaBRI need any help they can get. If in doubt, I strongly suggest you get in touch with them to learn more. Do not pass up this opportunity to help please.

If you had SNUC and won your fight, you can still help.

CaBRI Med is also interested in understanding the treatment protocol for survivors. As mentioned by Barb Abernethy here, there has been some research in regards to timing of the different treatment options (chemo, radiation, surgery). The more information (data) they can obtain from survivors, better are the chance they may find a pattern and a preferred treatment schedule for SNUC patients. If you had SNUC, please contact them using the email address above to see if you can help.

Anyone can fight back too!

Just give something to the Ashley Abernethy Purple Star Memorial Fund. All funds are dedicated to the fight against SNUC.

Thanks for your help.

Marco