International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. Ataxia could be the most serious condition you have never heard of.
Tag: rare disease
15 Years of Rare
After 15 years of living with my rare disease Immune Thrombocytopenia (ITP) I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the least. I have jumped numerous fences and dived through more hoops than I care to remember.
Darcy’s CACNA1A Story
My name is Darcy Marie. I enjoy the simple things, shopping, horseback riding, walking in the park. But today I’m going to share my story.
Poland Syndrome Awareness and Me
My story with Poland Syndrome started the day after my son was born, when I noticed his fingers were joined together.
Lisa Antonelli Cole’s Long Journey to Diagnosis
I was diagnosed in December 2013, though I was misdiagnosed for several years prior. I feel very badly that misdiagnosis of ataxia is…
Emily’s 427 Mile Trike Ride with Ataxia
For the past six years, my summer vacation in the last week of July was taken by participating in this little ride called RAGBRAI …