In this blog, Libby Frandsen shares how her life has changed for the better since being diagnosed with Friedreich’s Ataxia (FA)! If you are interested in anything else Libby has shared about her life, be sure to check out these resources: Experiences I’ve Had Thanks to FA When I was first diagnosed with Friedreich Ataxia… Continue reading Cool Things FA Has Allowed Me To Do
Category: Rare Diseases
Reflecting On My College Journey with Friedreich’s Ataxia
Note: This is a repost from Noah’s Blog. Please visit his fantastic site to read more about his journey! College is hard for me to look back on. I love it; I hate it; I miss it, but I couldn’t do it again. It holds some of the most precious memories of my life. The… Continue reading Reflecting On My College Journey with Friedreich’s Ataxia
When Your Partner Becomes Your Helper: Navigating Love and Caregiving With FA
What changes when you or your loved one starts to rely on you more for help around the house? What happens in a relationship when the dynamic now has to accommodate being a caregiver? This is a hard change for anyone to go through, and for people with Friedreich’s Ataxia (FA) it is inevitable that… Continue reading When Your Partner Becomes Your Helper: Navigating Love and Caregiving With FA
‘No Manual For That’: Mental Health & FA
Note: This is a repost from Noah’s Blog. Please visit his fantastic site to read more about his journey! Throwback to a September night in Alabama. It’s hot and the stars are sparkling, but I wouldn’t have known. The roof had been the peak of my view all day. After hours of scrolling on my… Continue reading ‘No Manual For That’: Mental Health & FA
Traveling Overseas For the First Time Since Being Disabled
In this blog, Libby Frandsen shares her experience going overseas for the first time since become a wheelchair user! As someone with Friedreich’s Ataxia, there is a great deal of planning and many extra steps that go into travel. If you are interested in anything else Libby has shared about her life, be sure to… Continue reading Traveling Overseas For the First Time Since Being Disabled
How I Learned to Do Things Differently With FA
In this Q&A with PLM member and FA Ambassador Kelly Gregory, she shares how she has adapted to living with Friedreich’s Ataxia. As someone who heavily prioritizes movement and exercise in her life, FA has presented Kelly with a number of challenges. But she is no stranger to obstacles! If you are interested in any… Continue reading How I Learned to Do Things Differently With FA
My Fall FA Routine: Why Swimming Should Be Your Go-To
Exercise is an important piece of managing a condition like Friedreich’s Ataxia (FA). Regardless of your progression, staying active can and will increase your strength and flexibility, help with balance, coordination, and heart health! But what exercises are best to try? They are going to vary person to person. What works for some might not… Continue reading My Fall FA Routine: Why Swimming Should Be Your Go-To
Finding Your Footing After an FA Diagnosis
A new diagnosis of Friedreich’s ataxia (FA) can leave you with a long list of questions: What happens next? Which doctors do I need to see? What should I know about FA? What can I do to manage symptoms? And where can I find other people who understand what I’m going through? You do not… Continue reading Finding Your Footing After an FA Diagnosis
How FARA Is Helping Move FA Research Forward and Why Collaboration Matters More Than Ever
How do researchers and scientists make progress on treatments and cures for rare diseases? The human body is incredibly complex, and understanding how certain conditions affect it takes time. For a condition like Friedreich’s Ataxia, that means years of careful research, data collection, comparison, and slow progress. One of the leaders in this charge is… Continue reading How FARA Is Helping Move FA Research Forward and Why Collaboration Matters More Than Ever
Tracking Your FA Progression Without Letting It Take Over Your Life
You do not want to have a condition like Friedreich’s Ataxia take over every part of your life. However, tracking your progression, and understanding how your physical capabilities alongside your mental health change over time, is important! So how can you track your progress while still preserving time throughout your day to do things you… Continue reading Tracking Your FA Progression Without Letting It Take Over Your Life