#Repost @curefa_org with @get_repost
💐 The ‘6th Annual Mother’s Day 5K Race for Christina’ was held on May 13th (Mother’s Day 💞), and hosted by the Logan family ❤️ at the Tyler State Park in Richboro, PA ☀️ The Mother’s Day Race featured a musical performance by Council Rock South Marching Band 🎶, smoothies provided by Smoothie King 🥤, snacks, and waters provided by Trader Joe’s 🍡, a 5K sponsored by Doylestown Runner’s Advocate 🏃♂️, and a fabulous Silent Auction 🤫. The event welcomed 168 participants and raised over $17,000 💸 to find a treatment/cure for FA. To read more click here 👉 bit.ly/2klPSCc
The 6th Annual 5K Race for Christina raised close to $18,000 last week! This year was our best year yet with the most participants and donations! My family is forever grateful who came out last Sunday and:or donated! Also my FAmily in this photo- Kyle, two Anna's and myself are lucky to have amazing supporters behind our backs! Together WE WILL cure FA! #cureFA#FriedreichsAtaxia
Today is Friedreich's Ataxia Awareness Day! We are joining the Lend Us Some Muscle campaign by "Flexing for FA" to raise awareness for my brother, myself and my FAmily living with this disease.
FA is a genetic neuro-muscular disease that can lead to motor control issues and often leads to the inability to walk, problems with the senses and swallowing, and later in life, heart complications. There is no treatment or cure for this disease.
Everyday seems like FA Awareness Day. Since my diagnosis on April 20, 2011 when I was 21 years old, each day is a constant reminder on how I need to adapt or modify my daily activities of life. I struggle to walk and use a walker occasionally, my speech is slurred and I am always fighting fatigue. However, I try to live an active and independent life as much as I can and advocate this disease with a positive attitude!
Missing my MBA Commencement today at @jwuprovidence, but looking through these sweet, sweet memories with my family I cherish will never forget! I am proud to say today is my official graduation date! I am proud to receive both my undergraduate and graduate degree from Johnson and Wales University in Hospitality Management! I couldn't do it without the support from my amazing family! I love you guys so much! ❤️🍍🐱#JWU#JWUProvidence @
Please send positive vibes and prayers to my family today. My dear friend/FAmily, Brittany and her family from Missouri sent me these flowers to get us through today. Man we have amazing people in our lives even from 900 miles away! ❤️
Happy Mother's Day to the woman who teaches me how to be strong everyday! Thank you for sharing the day with me to have another successful 5K Race for Christina! 168 people showed, we started the race exceeding our goal of $15,000 for FA Research and it took me 36 minutes to ride my trike! Thank you Ma by helping make today possible! 💜 #MothersDay#cureFA#FriedreichsAtaxia
Two days left until the 6th Annual 5K Race for Christina! Today is the last day to register online and get the lower registration price! Walk ups on the day of race and donations online are still available! Come out this Sunday to beautiful Tyler State Park to celebrate your mom and loved ones and help cure FA! Thank you for letting me share this day with you, Ma! No one fights alone 💜 click link in bio to register and/or donate!
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One week until the 6th Annual 5K Race for Christina! Come out to beautiful Tyler State Park with FAmily, family and friends to help CURE FA! All money raised goes to @curefa_org for FA Research! Link is in bio to register/donate. Hope to see you there! #cureFA#FriedreichsAtaxia#BucksCounty#NewtownPA
Completed 2 things today:
1. Takeda Phase 2 Trial - that past 12 weeks have been inspiring. I took three pills, twice a day to to test the dexterity and mobility in my arms and legs. It stinks I won't be able to share my side effects and hear the results until all 60 patients complete the process. But, I hope to be contacted for Phase 3 of the study, which my doctor seems very promising of today! I have my family, friends and coworkers at work who helped me make this opportunity possible and supporting me 110%!
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2. Annual Check-Up - 6 years of living witness Friedreich's Ataxia has its ups and downs. Today, my cardiologist said my heart tests came back more than normal! Couldn't even tell I had FA. However, my neurological exam was not the best. I usually receive low scores (0's and 1's) for my performance measures Year over year, but today I received my first 2. Not going to lie, I cried in the bathroom. Now this could be from working 10 hr work days to have today off or because my progression is getting worse. Most importantly my heart is healthy and I got the message to keep doing what I'm doing by outliving this disease and being a strong advocate for the FA Community. Together WE WILL cure FA!
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