We have been fortunate enough to speak with a number of our members about their career journeys! It is a very tricky part of life to navigate, and in this piece Libby Frandsen speaks about her career evolution as she adapted to FA. Libby has worked with us on a number of articles and videos,… Continue reading Freelance, Flexible, Remote: Real Work Paths People Use When Traditional Jobs Change – Libby Frandsen
Tag: Friedreich’s Ataxia
When You’re Running on Empty But Still Have to Be A Caregiver
Stop me if you have heard this before: caregiver fatigue (or burnout) is one of the most common things anyone in a position where they have to manage a loved one’s health will experience. Over 60% of people who are caregivers feel it. For some, this fatigue can be mild. Maybe you feel slightly more… Continue reading When You’re Running on Empty But Still Have to Be A Caregiver
Freelance, Flexible, Remote: Real Work Paths People Use When Traditional Jobs Change – Hayden Howard
We are very excited to bring another featured interview of one of our members! Hayden Howard has helped us plan and build the FA community on PLM, and was directly responsible for contributing some content to the site: Hayden is also both a FARA Ambassador and has presented at NAF events! She is an incredibly… Continue reading Freelance, Flexible, Remote: Real Work Paths People Use When Traditional Jobs Change – Hayden Howard
Freelance, Flexible, Remote: Real Work Paths People Use When Traditional Jobs Change – Kathleen Moore
We have been extraordinarily fortunate in finding people to join the PatientsLikeMe FA community who are willing to talk about some of the challenges they have faced. Chief among those – Kathleen! She has contributed a number of pieces already: And that’s just a few of them! Here, we wanted to cover a topic that… Continue reading Freelance, Flexible, Remote: Real Work Paths People Use When Traditional Jobs Change – Kathleen Moore
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
Why Cruising Can Be One of the Best Ways to Travel When You’re Living With FA
Taking a vacation when you have a degenerative condition like Friedreich’s Ataxia takes a huge amount of preparation. You cannot expect to just hop on a plane, get to your destination, and be able to enjoy everything there is to offer! New locations mean new accessibility challenges. Will the restaurants have ramps? Does the hotel… Continue reading Why Cruising Can Be One of the Best Ways to Travel When You’re Living With FA
Planning Ahead with FA: How to Navigate Financial, Insurance, and Future Care Decisions Before They Feel Urgent
Getting a Friedreich’s Ataxia diagnosis means dealing with change. It means accepting and preparing for your life to be different. For many people with the condition, it means being thrown into a world of medical jargon and complicated insurance questions that most people never consider having to get their heads around! But being prepared, and… Continue reading Planning Ahead with FA: How to Navigate Financial, Insurance, and Future Care Decisions Before They Feel Urgent
What Should I Actually Be Asking My Doctor? FA Appointments, PT, and Planning Ahead
Interview with PatientsLikeMe Patient Advocate, Kelly Gregory Doctor’s appointments can feel overwhelming, especially when you’re not sure what questions to ask. In this Q&A, I’m sharing what I’ve learned about preparing for appointments, getting the most out of physical therapy, and planning ahead while living with FA. Q: How do you prepare before an appointment… Continue reading What Should I Actually Be Asking My Doctor? FA Appointments, PT, and Planning Ahead
Beyond the “What Ifs”: Dr. Sharma Answers Your Questions About Living with FA
Hearing that Friedreich ataxia is “progressive” can bring up a lot of questions, and a lot of fear. In this Q&A our FA expert, Dr. Sonal Sharma, pediatric neurologist and FA specialist at Children’s Hospital of Philadelphia, answers common questions about progression, staying active, knowing when to seek medical care, and how to focus on… Continue reading Beyond the “What Ifs”: Dr. Sharma Answers Your Questions About Living with FA