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FARAFARA Cure FA

Christina Cordaro and Catherine Logan

Logan Siblings 2Name: Christina Cordaro

Age: 28

Where do you call home? I've lived in Philadelphia, PA, for the past 7 years, but I am from Bucks County, PA.

Education: I have received my Master of Business Administration in Hospitality Management and Bachelor's Degree in Hotel & Lodging Management, both from Johnson & Wales University. I currently work at The Bellevue Hotel, in the Unbound Collection by Hyatt. My career goal is to be a Director of Revenue Management.

What is your relationship status? I recently got married this past October to my husband, Justin! My immediate family includes my dad, mom, sister, Catherine (32) and brother, Matthew (17).

What's a typical day for you? I take public transportation (the bus) to and from work and work full-time in Reservations/Revenue at The Bellevue Hotel, in the Unbound Collection by Hyatt in Philadelphia, PA. Then Justin and I like to cook dinner, and I like to exercise on my stationary recumbent bike in our apartment.

How long have you known you are living with FA? I started noticing symptoms at age 17 years old, but I was not diagnosed until I was 21 years old. I went to four different hospitals before I was diagnosed at Johns Hopkins University at the Ataxia Center. I am now a patient at Children's Hospital of Philadelphia (CHOP) and am under the care of Dr. Lynch in the Friedreich's Ataxia Center of Excellence.

Are there any others with FA in your family? My brother, Matthew was diagnosed almost 3 years at CHOP and currently only shows the symptom of scoliosis. Our doctor, Dr. Lynch says he may not show any symptoms at all in his lifetime! I hope that is the case.

Describe your transition from walking to walker/wheelchair: A few months ago, I started using a rollator every day to help me get to and from work and at work. I came to the realization it was time to start using one because I was falling frequently (a few times a week) and felt unsafe with my balance and walking progressing.

What do you like to do to stay active and what type of exercises work for you to stay strong? When the weather is nice out, I love to ride my recumbent trike in local parks and exercise on my stationary recumbent bike in our apartment. I also practice at home physical therapy exercises.

Do you have any hobbies or special interests? Try new restaurants, breweries and wineries, travel, go to concerts, go to Phillies games, and write as a columnist on Friedreich's Ataxia News

Logan SiblingsWhat is a good trick to make daily life easier? Not getting worked up on the things that are becoming harder to achieve. Take a deep breath, stop what you're doing and try again. It's important to remember you can do anything you set your mind to.

When FA gets you down, what do you think/do to feel better? I think of the wonderful support system I have of family and friends.

What is one way living with FA has POSITIVELY affected your life? I have met the most remarkable, strong-willed and caring people ever, my FAmily.

What is a favorite motivational quote of yours? "Impossible is Nothing"

What is a piece of advice that someone with FA has given you that encourages and inspires you? "Just because you have a bad day, doesn't mean you have a bad life." Yes, there may be things that we are losing the ability to do, but we should never lose sight of all the good and positive aspects in our life. For example, I have a great husband and family, support system of friends and family, I work full-time, live in a beautiful apartment and try to live an independent life as much as I can!

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Get involved! Join the FA Patient Registry, The more people registered, the quicker we can get involvement in clinical studies and trials which could lead to a treatment and/or cure. Register here

What is the first thing you want to do when a cure/treatment to FA is found? Run up the famous Rocky Steps at the Philadelphia Art Museum!

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? FA does not stop me from achieving my dreams! For example, I completed my Masters on an online program while working full-time, planning a wedding and battling FA.

Tell us a little more about you: From third grade up until senior year of high school, I used to play the viola. My senior year, I made first chair of the section. Music and playing in the orchestra was such a huge part of my life; I would love to play again if I could get the feeling in my hands and fingers back!

 

Interview with Christina's Older Sister

Logan Siblings 3Your Name: Catherine Logan

Relation to FA patient: Big sister to Christina

What quality or trait has been brought out the most in you as Christina is living with FA? Being more aware of what Christina can or cannot do. Trying not to push her to do too much when we are out shopping, traveling, etc. I am more cognizant of when she is getting fatigued and needs to take a break. It took a while to get there, but now I always make sure to check in with her when she needs a moment to sit, relax, or put her legs up.

What did you find was the best way to discuss the diagnosis with Christina? At first, when we were learning about FA and what Christina's diagnosis meant, I did a ton of research. I wanted to be as educated as possible about the disease and help Christina any way I could. Also, focusing on the science of the diagnosis distracted me from the emotion behind it. I was sad, angry, I questioned God every day asking why did He let this happen to my sister who, let's be honest, is the perfect straight-A student, first chair Viola player, never has a slip up in her life. I always felt I could never compare to how wonderful a person she is, why was this happening to her and not me? But my family is very close, and we talk out our feelings A LOT. Making sure we had open communication and dialogue every step of the way is what got our family through the diagnosis.

What advice would you give to other siblings to FA patients whose sibling is newly diagnosed? As simple as this sounds, just be there. Be there to listen to the phone calls, go to appointments, attend events, etc. Trust me, you're going to be mad, angry, frustrated, feel like you're not doing enough. But by just being there for your sibling means the world to them and helps them feel supported. I knew Christina wasn't happy with her diagnosis, so to raise her spirits I planned a 5K on Mother's Day in her honor. I had no clue what I was doing, if people would show up, or if we would raise any awareness or money, but I had faith and went for it. All the hard work, time, and energy was worth it just to see Christina's smile that day. Something I hadn't seen in a while. Our 5K gets bigger and bigger every year, and I am so proud our event has become a yearly tradition for our FA Community. Now I am not saying you have to host a grassroots event like a 5K immediately. But there are ways to get involved and get the word out about FA! Whether it is hosting a fundraising night at your local restaurant, or creating your own team at your closest Ride, getting involved is a great way to meet new people, create a support system of more FA families, and makes your sibling feel good as well.

How has Christina inspired your life? I tell a lot of family and friends that if I found out tomorrow that I have a rare neurological disease that affects all my muscles, balance, speech, and heart, I would lock myself in a room, break down, and never come out. (I tend to be more of the dramatic sister.) Christina is the complete opposite. She is a little warrior. She took her diagnosis and said, "OK, what's next. Let's move forward." She does have some rough days, however, the good seems to outweigh the bad. She completed her Master's degree from Johnson & Wales, lives in Center City Philadelphia, met and married the love her life, she is the biggest foodie you will ever meet, plus she is a loyal friend and greatest sister ever. I look up to her every day. Lately, I have been trying to lose weight, and get back to being healthy. I have been taking classes at Orangetheory Fitness which is crazy, circuit training. Somedays I want to blow it off, or I am there on the rowing machine and think "I cannot do this." But then I think of Christina, and how hard she works each day to stay in shape and keep healthy. She is my constant inspiration to attack my goals, and go for it.

How have you been encouraged for Christina's future living life with FA? Not trying to rush anything, but I am ready to be an Aunt, haha. I think something I have always wondered was could Christina start a family of her own someday? To be honest, I have always been discouraged and didn't think it could be possible. But we have seen our good friends that have FA having babies recently, and it made me very hopeful. I am excited about Christina's future and know that she will be a great mom someday. She has a wonderful support system, and we will all be there to take care of her and help her every step of the way. Just call me Aunt Kitty.

What is one way FA has POSITIVELY affected your lives? One way that FA has positively affected our lives in the network of family and friends we have met through this journey. I always tease and call us the FA Mafia or FAmily. Everyone truly protects each other and helps in any way they can. I recently moved away from my family from Pennsylvania to Maryland. I instantly made a connection with the Morrow family in Baltimore, and they have made me felt so warm and welcome. It's unreal to think we have FAmily, all the way up in Vermont, to Providence, and down in Florida. I cherish those relationships so much and thank the FARA network for bringing us together.

MaryNadonScott sig 17

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