I have shared that my reaching out to the media and legislators has gotten me as far as the White House. But believe me, this is not...

I have said before that mental health care is the hill I will die on. Rare disease, while very important to me and a passion, if I drill...

April was Adrenal Insufficiency Awareness Month. Many organizations had events and information in various formats to bring attention to...

This month is Adrenal Insufficiency Awareness month. I have explained already the science behind adrenal insufficiency on a very basic...

Last time I spoke about Newborn Screening and how many chronic and rare diseases are caught on that in the first couple days of life....

If you are lucky enough to not be part of this rare community you may not realize that there is not a clear path to follow for many of...

It seems everything has a special week, day or month these days. And, honestly everything does - last week there was even Grilled Cheese...

Supporting parents who have been through similar experiences as I have been through has been part of my life for the last 15 years. From...

In the last six weeks both of my boys have had birthdays. They are now both in their 20's. For most of their childhoods I was a stay at...

I was not going to post today, but it is Adrenal Insufficiency Awareness Month and my morning has taken an unfortunate turn. My son is...

I had shared in previous posts about the Adrenal Insufficiency United conference that was being help at the end of March in Portland. The...

One thing that I do get asked quite often when I speak about our son with Addison's is how did I deal with the sibling issue. Now...

When I ended my last entry, the world had just shut down for two weeks to "stop the spread" of CoronaVirus/Covid 19. Many have differing...

When I last left off, he was packing for college, COPD diagnosis, nebulizer and all... That was fall 2019 and a lot of you reading that...

The son that I have primarily talked about up to this point is our youngest, the one who is diagnosed with the actual rare disease, as a...

Remember in the early days of the pandemic when people would hoard toilet paper and there would be shortages on it? A shortage on toilet...

At times I will explore rare diseases not directly impacting someone in my immediate family. I want people to be aware of the wide...

Some days as the mom of a son who has been through as much as our son has in the last seven plus years are harder than others. Some days,...

Wow!! It is already the first full day of spring 2023 - how does that happen faster and faster each year?? Spring brings with it things...

Last month we heard the news, Bruce Willis has frontotemporal dementia. It was news that those of us in that world expected to hear after...