Katie Griffith

Rare Disease Day might seem like a strange thing to celebrate. For most of us, it wasn’t a happy day when we or our loved ones were diagnosed.

As I personally have processed and accepted my son’s diagnosis of Friedreich’s ataxia, I do celebrate him and want others to understand what he is experiencing.

While we may not celebrate the disea…[Read more]

Finding out you or your loved one has a rare disease is so overwhelming. Little by little as time goes on, you learn more about the disease and find ways to help cope. 
When I explain Friedrich’s ataxia to others, I say that it is a progressive neuromuscular disease that currently has no treatment or cure. Then I explain the ways that it sp…[Read more]

This month, we will be discussing rare disease topics as we get ready to celebrate Rare Disease Day on February 28. 
I clearly remember the day I first heard the words “Friedreich’s ataxia”. My son, Noah, and I were sitting in a pediatric neurologist’s office after years of trying to figure out his individual symptoms. 
I googled it as we were w…[Read more]

Over the holidays, all three of my kids were home. We have all gotten used to our own schedules and routines, so things were harder with us all at home again. 
If we all had to be somewhere at a certain time, it seemed like we were always late! I don’t enjoy being late, and it was frustrating to me a lot of the time. I seemed to constantly be hu…[Read more]

BioNews invites the members of our rare disease communities to join us in recognizing Rare Disease Day in February by answering the question, “Why does rare disease awareness matter to you?”

Email your 150-200-word response to [email protected] along with two high-quality pictures of yourself that capture your “why.”

We encoura…[Read more]

Life is full of decisions, big and small. Sometimes, I feel really overwhelmed, and making any size decision can be a challenge. 
When you are a caregiver, not only are you responsible for your own decisions, but you also feel responsible to make the best decisions for your loved one.

There is a podcast I enjoy called “The Next Right Th…[Read more]

A new year seems like it should come with a clean slate. Unfortunately, problems from the past year don’t disappear once the calendar changes to a new one. 
It often takes a long time to notice changes, and we tend to get discouraged because things aren’t happening more quickly. 
Celebrate the small victories in your life and in the lives of th…[Read more]