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Last month, I attended a PTC Therapeutics meeting with two other Friedreich’s ataxia patients named Kyle Bryant and Connor Sweeny, plus people who work for the Friedreich’s Ataxia Research Alliance (FARA). PTC Therapeutics is one of FARA’s gene therapy development partners. The day consisted of watching…
I used to enjoy going to the grocery store. I loved picking out items, seeing what’s new in stock, and hunting good deals in the store’s weekly ads. However, grocery shopping has become physically challenging as my Friedreich’s ataxia slowly progresses. It’s tough to deal with the crowds and fatigue…
In a previous column, I wrote about the power of patient advocacy. I’m motivated to embrace advocacy in my everyday life to let the world know that disabilities come in all ages, shapes, and sizes, just like Friedreich’s ataxia (FA). This disease is extremely rare, affecting only 15,000 people…
I recently saw a news article about a bridal store in England that not only made a positive impact on one future bride’s life but also on others’. The White Collection Bridal Boutique displayed a mannequin in a wheelchair while wearing a wedding dress. Someone posted a photo of it on…
Everyone has a morning routine, a plan that sets the mood for the day. Most people become so used to the regimen that they carry out tasks on autopilot. However, when living with a rare, neuromuscular disorder such as Friedreich’s ataxia, the routine can become irregular and require additional concentration,…
An approaching new year means multiple things to different people. A new year can mean starting over or aspiring to new goals or resolutions. It is an appropriate time to be happy and to seek a fresh start to be the best version of yourself. Regarding life with Friedreich’s ataxia,…
Let’s talk about what to do during the “calm before the storm.” And no, I am not talking about going to the grocery store during the holidays to fight through fanatical crowds for butter, milk, and eggs. I am talking about how to take advantage of calm days to prepare…
Editor’s note: This column discusses what has worked for Christina Logan, but others may not have the same results. Second in a two-part series. In last week’s column, I discussed how fatigue is a Friedreich’s ataxia (FA) symptom that has gotten the best of me. Every day, I internally…
Editor’s note: This column discusses what has worked for Christina Logan, but others may not have the same results. First in a series. Recently, I implemented two major life changes for the elimination of my fatigue associated with Friedreich’s ataxia. Over the next two weeks, I will share these two…
Thanks to Friedreich’s ataxia, I’m never more anxious than in an open crowd in a big space. While feeling hopeless and lost in space, a lot of mixed emotions and questions run through my head: “Will I be able to transport through the crowd OK, or will I lose my…
Navigating huge crowds at major events can cause great anxiety. For example, going to an arena concert or an NFL football game can include encounters with crazy fans, rude comments, long lines, and difficulty transporting to and within the vicinity. I used to avoid major events because of those reasons.
In my hotel hospitality job, I can count on working long hours, multiple days in a row, and on holidays and weekends. I knew what I signed up for when I graduated with a hospitality degree and accepted that first job offer. The thing I didn’t realize was that I…
My husband Justin and I returned last week from our honeymoon in the Bahamas following our beautiful wedding on Oct. 20. I was determined that I wouldn’t let Friedreich’s ataxia (FA) deter me from doing the things I wanted to on this trip. I also didn’t want to experience the…
This is the final countdown. The big day has finally come. Tomorrow, Saturday, Oct. 20, I am marrying the man of my dreams, Justin. These days, it is hard to enter a relationship, especially when living with a rare disease that one can’t even begin to understand. Before I met…
My family and I have always been religious, with strong beliefs, faith, and morals. My mother is Catholic and raised my sister as such. My father, an Episcopalian, raised my brother and me in his church. From elementary school to high school, I attended church and Sunday school weekly. I loved…
Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the starting line at the rideATAXIA Philly event. The annual bike ride takes place in Southern California, Northern California, Dallas, Chicago, Philadelphia, and Orlando. This fundraising event seeks to empower…
Recently, I saw the following quote shared on social media. It stands out, particularly when I am making plans to go to various public places. “Ramps should be the standard. Automatic doors should be the standard. Elevators in…
Shoes are essential for making a statement on one’s wardrobe and personality. This is especially true for me as a young woman with Friedreich’s ataxia. I want to be able to fit in, yet still feel comfortable and safe. It’s been difficult to find a pair of shoes that best…
The three-day Labor Day weekend often means relaxing and spending time with people you may not often see. This holiday, my fiancé Justin and I visited his hometown near Scranton, Pennsylvania, to see family and friends. It had been two months since our last visit. It was a…
When you plan a destination or a weekend getaway, it is wise to make travel and transportation arrangements and detail an itinerary of what you will do while on your trip. However, when you have a disability, extra steps are involved in planning. My planning includes three components: plan in advance,…
I know that birthdays can be tough for some patients living with Friedreich’s ataxia. It can be a reminder of how much this disease keeps taking from us each year. I completely understand. It is hard not to get down on the things we still can or can’t do. However,…
My name is Christina Logan, and doctors diagnosed me with the rare neuromuscular disorder Friedreich’s ataxia at the age of 21. I grew up in Holland, Pennsylvania, with my dad, mom, sister (Catherine), and brother (Matthew). I was very active in the music community and participated in choir, the marching…
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