top of page

Media & Press Resources

​About Living with hATTR

We’re Sue & Tony Skavlem. And this is our Journey.

 

Our hope is to promote awareness of hATTR, update our friends & family on our journey, and create resources other families with hATTR can use.

 

When you're facing a rare disease, it's easy to feel alone. There is no current cure for Amyloidosis. But in the last 9 years, there are significant advancements in NEW medications that can slow the disease down, and change the story.

 

We believe that living with hATTR = living with hope.

 

♥ Sue, Tony, & Corbin

​​​​

When you're facing a rare disease, it's easy to feel alone.

Thank you for coming with us for the journey.

Skavlem Family - Photo Credit Andy Garske

Milestones

  • Kent's Anniversary -  We started our fundraiser on Friday, July 12 - the death anniversary of Tony's dad (Kent Skavlem)- who died from hATTR 13 years ago. Since then, we've had a wild online response. 

  • July 18, 2024 - Tony was approved for the 1st of 2 medications he needs to live with hATTR - The SILENCER (which will slow down or stop the amyloid production)

  • September, 2024 - Tony was approved the the 2nd of 2 medications he needs. - The STABILIZER - this will help keep his heart pumping, and is one of the only medications available to hATTR patients that ALSO helps stabilize the brain (to keep the amyloids from causing Alzheimer's

Amy - Loid - Osis. (or hATTR) It’s a mouthful. And it tastes bitter. There’s no cure yet, and this is a rapid-onset disease. Within 1 year, Tony's disease spread to multiple organs, bringing with it a short-circuiting system. We don't know day-to-day whether he'll be able to play on the monkey bars with our son, whether his legs won't work that day. 
He's on the maximum dose of nerve pain medication, and some days it's not enough.

Why Does hATTR Stand for Amyloidosis?
h= hereditary, A= amyloidosis, TTR = the protein that misfolds and creates the amyloid.

If you inherited the gene. You have the amyloid building up in every system in your body. But the disease onset doesn't start until there are too many. From there, it's a rapid onset.

It's genetic. So if one of your parents had it, you have a 50% chance of inheriting the misfiring gene.

If you don't have the gene, you won't pass it on to your kids.

If you do have the gene, each kid you have has a 50% chance of getting the gene.

bottom of page