I recently co-authored an article about what to do the day after receiving a diagnosis. Steps to take, tips to follow and how to find support. I have since been thinking about it and what I did with my life after my son was diagnosed with an ultra-rare disease. As caregivers and patients, some of … Continue reading Advocacy…
Thrilled to be among many of the incredible rare disease leaders focused on the Rare Daily by Global Genes and so excited for our Utah Rare Symposium happening on March 3rd! Thanks for the interview Daniel Levine. And yes- Draft Day truly is one of my fav movies! #footballfanatic https://globalgenes.org/raredaily/rare-leader-anne-bruns-sponsor-chair-of-utah-rare/
Grateful to co-author an article with one of my dearest friends and rare advocates Carrie Ostrea from Little Miss Hannah Foundation about what to do after receiving a diagnosis. Check out the latest issue of Exceptional Parent magazine focusing on Navigating Special Needs Resources. https://reader.mediawiremobile.com/epmagazine/issues/202720/viewer?page=19
Frustrating. The number one word used over and over when asking rare disease patients and caregivers how they feel when hitting the ER or Instacare- any unplanned medical visit. Rare disease patients are not your standard walk in ER patient. They are not drug seekers. They need help. This question is part of a survey … Continue reading Frustrating.
Yesterday I had a break between conferences and took the kids to Disneyland for an adrenaline and beignet fix. I always tell my kids that they should put their hands up in the air while on coasters- it makes it so much more exciting! Each time they are on a coaster they get more brave … Continue reading How to ROCK a Rollercoaster!
Like most of us out there, the last few weeks have been filled with thinking about what my resolutions for the New Year would be. Fitness, finances, …all the same things that for me personally are going to last 7 – 10 days if I am lucky. One night while looking at inspirational quotes, I … Continue reading 6 Habits of a Rare Mama