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FARAFARA Cure FA

MTC Gratitude

We have learned about many FA community members through our Meet the Community blog posts. Our contributors have: made us laugh; made us cry; given us wisdom; and reinforced our belief that people with Friedreich’s Ataxia and their friends and family are strong individually and even stronger together. Most of all we know how to live with FA better because our contributors thoughtfully shared themselves. To thank them we have shared our favorite lines from their posts (In no particular order.). Did we miss yours? Share it with everyone in the comment section below. We can’t wait to read the future Meet the Community posts.

Thanks! The FARA Ambassador Blog Team

AndreaChristinaErinJamieJeanJohnLaurenLealanStephanie

 

“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?

 

Daniel Tanchez: “FA means I have to work harder, push a little more than the other guy. … At the end of the day, I want people to see me for my success, not see me as having FA.” Alex Dagley: “I am not defined by FA. This disease means nothing in the grand scheme. It may slow me down. It’s not going to stop me.” Brooke Ziegler: “As far as living life despite adversity, I imagine I have two choices; be depressed to the point that no one enjoys to be around me or I can be positive, outgoing and make smiles. I choose the second.” Rylee Burris (8): “I believe I can do anything anyone else can do. I might have to do it differently, but I can still do it. FA doesn’t stop me from being me.” Jason Drake: “FA doesn’t control my limitations!” Jacob Tompkins: "I would walk though the fires the burn in the path of my dreams." Hannah Barnhill: "This statement is something I have to remind myself of sometimes. Even though times get stressful, this disease doesn’t define me. I might have to physically work a little harder than other students, but I can and I will do it! I live my life as a college student, not as a college student with a disability." Janesh Wadhwa: “FA will only have me when I can let it take over my mind, which I won’t. Like Batman rightly said, “It is not who you are but what you do that defines you.””

 

What quality or trait has been brought out the most in your child despite living with FA?

 

Mindy Burris (Rylee’s Mom): “Her spirit and determination. She continues to do things just like other kids and she never gives up regardless of how hard it is for her. She teaches us each day how to be strong.”

 

How has your son or daughter inspired your life?

 

Andrea Perusich (Emily Therens' mom): "As I mentioned before, seeing her be able to be positive right now has really made me stop and think. As a mom it definitely isn’t easy getting news like this but I couldn’t imagine how she is feeling! She has commented on future things like boyfriends and driver’s license but at the end she always reminds me that she isn’t going to let others get her down and she is going to live as normal of a life as possible! It’s no question in her mind that she will be going to college and having babies some day! She’s not going to let this ruin her plans!"

 

What is one way living with FA has POSITIVELY affected your life?

 

John Ryan: “I have met lots of people I would not have met if I never had FA.” Alex Fielding: “FA has given me a purpose and allowed me to refocus on what’s important. FA doesn’t restrict my life, it refines it and allows me to focus on my strengths ...” Brendan Welsh: “It’s made me more compassionate and taught me to never take things for granted. I realize that having FA doesn’t mean I’m disabled in every way.” Matt DiIorio: “The absolute most positive thing living with FA is meeting the wonderful FAers and their families over the years and also being closely involved with FARA.” Emily Therens (age 14): " It’s made me appreciate things and people more."

 

What is the best advice you could give to a person who has been newly diagnosed with Friedreich’s Ataxia?

Pam Shortt: “Live each and every day to the fullest and take it as it comes. Life is what you make it. If you want to do something, don’t let anyone stand in your way. Nothing is impossible!!!!" Abby Yingling: “Although it can be a life-threatening condition, you can’t let FA get in the way of living your life. Do anything and everything you can.” Christin Haun: “Be proactive and diligent with diet and exercise.” Jason Dagley: “Learn all you can about FA because understanding what is and will happen makes life easier. Actively listen in doctors appointments.” Hannah Stacks (age 11): “Stay strong! You can get through this." Luke Cooper (age 12): "It’s hard sometimes and frustrating, but keep going!" Raena B. (age 13): “Being diagnosed doesn’t change you. You’re still your strong, lovely self. It does not define you. It just makes you stronger.” Preston Lynch: “My advice is to start looking at things you can do; not things you can’t do.” Alyx Holliday: No matter what you are going through there is always someone who has been through the same thing, so don’t be afraid or shy. Reach out. Ask. Talk to us. We’ve been there and we get it like no one else can. You’re never alone!" Paige Meyers: "Having a positive outlook is critical. Don’t focus on what might happen and instead try to live in the moment." Sam Brown (age 14): “It ain't that bad. You will have to go through tough things but it will be okay. God will watch you and carry you. I feel He’s done that for me.” Wenses Reyes: "The best advice I can give is to look into FA and seek out to your FA family for advice. Don’t be ignorant as I was. You have FA brothers and sisters that are here to guide you or maybe you can guide us. YOU ARE NOT ALONE!!"

 

 

What advice would you give to other grandparents and extended family whose loved one was just diagnosed?

Sandy Cooper (Luke’s Grandma): "And, remember to live for today… nobody is promised tomorrow." Trisha (Drake’s Mom): “The advice I would give another parent is there is hope! … Don’t ever think you’re alone because you are not. … There are so many great people out there willing to answer questions or just talk if you need it.

 

 

What is the first thing you want to do when a cure/treatment for Friedreich’s Ataxia is found?

Austin Stacks (age 7): “If a pill would be found to cure FA, I would want Hannah [my sister] to have it first." D.Elizabeth Haubert: "A cure for FA is actually not the be all and end all for me." Brittany Wiseman: “I want to go jogging to a shoe store and buy 6 inch stilettos!” Jason Drake: Clean the hunting dog pens! (from Jason’s interviewer, Jamie Plourde: “Jason is so funny. He is a farmer in Virginia and known for raising some of the best hunting dogs in the state. … I'm sure when a cure/treatment is found there isn't anything Jason will not be doing!”) Drake (age 8): “Get rid of my walker and all my meds!”

 

 

What do you like to do to stay active and what type of exercises do you do to stay strong?

Ashley Dodson: “Shopping and being social is what I do best! As far as exercising, I do not but if running your mouth could be an exercise, I have that down pat.”

 

 

The FARA website and blogs are getting a facelift. Brand new posts will return mid-February. Thank you so much for reading!

 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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