FARA Philadelphia Symposium 2018–Pics & Reflections

FARA Philadelphia Symposium 2018–Pics & Reflections

Hi, friends. I have a disability called Friedreich’s Ataxia. FARA–Friedreich’s Ataxia Research Alliance–is an organization of doctors, patients, scientists, pharmaceutical companies, patients’ friends and family, etc. that works to advocate, raise money, and search for treatments and a cure for FA. This is my fifth year attending the annual conference in Philadelphia. [Cover Photo Credit: Stephanie Magness, a FARA Ambassador]

We drove from North Carolina to Philadelphia, Pennsylvania on Saturday, leaving early and arriving in the evening. There appeared to be a wedding or party taking place that night, and people dressed to the nines roamed through the hotel. I wondered what they thought of seeing so many wheelchairs and scooters in one place!

Kyle Bryant at rideATAXIA Philly 2018

Sunday, we went to rideATAXIA, a huge fundraiser that occurs in several cities across the US and internationally. The rides consist of FA’ers using trikes or hand-cycles and able-bodied allies using regular bikes. People “sponsor” the riders, who sometimes cycle as far as 50 miles! Shout-out to Outback Steakhouse, Carrabba’s, and Bonefish Grill for providing delicious and bountiful food after the rides.

At rideATAXIA Philly 2018, $312,000 was raised for FARA!

Sidenote: The man who started rideATAXIA and is essentially the face of FA is Kyle Bryant. He’s awesome; he literally rode coast to coast ON A TRIKE in a documentary called The Ataxian. I take a look at him and think that age isn’t as important as the way you live your life/take care of yourself. If you like podcasts, check out Two Disabled Dudes.

Sunday night, we attended a meet and greet where FA’ers and family/friends/etc. get to mingle. We met new friends and caught up with old ones. It’s like a family reunion with great food and free beer and wine.

Monday morning, I hauled my butt out of bed to be downstairs at 8 am for the conference, which featured about ten presentations with breaks over the course of eight hours. Every presentation besides the patient panel pertained to an avenue of treatment being explored–stem cells, gene therapy, medicines, etc. Yes, the presentations are kinda dry, but I was hanging on the edge of my seat because I am SO HOPEFUL! We are going to cure Friedreich’s Ataxia!

The only group pic with me in it (fourth from the left, gray jacket)…I’m hoping blogging about events in my life motivates me to take more pics…someday

We reluctantly said goodbye to friends, already anticipating next year’s FAmily reunion. [Get it? FAmily?] We stuck around ’til the next day because I had a doctor’s appointment with David Lynch, a neurologist and FA expert, at CHOP (Children’s Hospital of Philadelphia). I requested prayers on Twitter and prayed silently on the drive there. Why? A few months ago, my cardiologist back home told me that I’ve developed a severely thick heart muscle. Since then, the fear of an imminent heart attack has resided in the back of my mind.

My silent prayer went something like this…Lord, I confess that I have sinned, but please receive my prayer…help me trust You instead of worrying…Thy will be done, but I am not ready to die yet…please let him tell us something to ease my mind…Amen


Dr. Lynch did, in fact, ease my mind, saying that a thick heart is not that bad by itself; a weak heart is much more dangerous. My heart is thick yet strong, so I’m going to keep working out a lot and challenging my heart muscle. A skeptic may say that Dr. Lynch would’ve told me that info with or without my prayer, which is probably true…but I believe that God heard my request for personal peace and granted it. I’ve seen prayer work in my own and others’ lives enough times to believe in its power. [And, considering the popularity of quasi-spiritual trends, I’m feeling less pressured to justify my belief in the supernatural.]

I love being connected to this community of beautiful, resilient, and awesome people.

Thanks for reading! I’m back to normal schedule next week. I’ll be catching up with y’all’s blog posts for the next few days. Stay tuned for the first installment of “Disability Chat” next week. 🙂

[Donations can be made at curefa.org]

32 responses to “FARA Philadelphia Symposium 2018–Pics & Reflections”

  1. Great post about you and your FAmily! (Yeah, I get it! 😁)

    I think it’s wonderful that you have that conference every year. I expect you left feeling reinvigorated, and I’m glad that your prayer was answered and your mind eased regarding your heart.

    Looking forward to your next post!

    Liked by 3 people

  2. I do not read many posts but I did your and I pray they will find a cure in Gods Will very soon in the name of Jesus our healer. I am so proud and happy to follow your blog and I hope some I post give you peace. Hi, I m Pat.

    Liked by 4 people

  3. So overjoyed with the ‘good news’ from Dr Lynch. I always love the smiling faces of the FA’ers, and I am reminded that the Lord works in mysterious ways. I delight in seeing these kids continue to go to school, work out, laugh, date, and enjoy life. What a marvelous community working together as we pray for a cure!

    Liked by 1 person

    • You are right! I suppose it is slightly sarcastic. Some people who act like Christianity is ridiculous are the same ones who would buy a witch kit or talk about such-and-such planet being in retrograde and affecting their life or other mystical ideas.

      Liked by 1 person

  4. Hi Lily! I don’t know much about FA but will do research on it to better understand. I’m thankful your Doctor gave you some encouraging words! I’m going to pray for you and thank you for sharing your story. 🤗❤

    Liked by 1 person

      • Thanks so much Lily! Emily is doing much better this week!😄 I am recovering from a bit of a setback over the weekend with my eyes but we both are definitely on the mend. We really appreciate your prayers! Praying for you!!❤🙏


  5. Lily, I did a bit of reading up on FA and although I don’t have it my nervous system is damaged from TBI so I can relate to you. Now, I know better how to pray. God is holding us. ❤

    Liked by 1 person

  6. Thanx for sharing your struggles. I, like anyone (I think) have natural curiosity about young people in wheelchairs and so forth, but of course those are personal matters for which questions can be insensitive. Your self disclosure helps that. It also is brave. And of course the struggle with maintaining good health is personal and brave to share too.

    Your story is touching and inspiring. May God display his wonders, his love, and his grace in your life for us all to see and be drawn ever more closer to him through you.

    God bless…


    Liked by 1 person

    • Thank you for your kind words, X. I understand that natural curiosity, and I hope my story enlightens people to some of the reasons a young person may use a wheelchair. When people open up about their vulnerabilities, we become more intimate and grow closer. In this case, speaking candidly as a young person in a wheelchair fights back against stigma also. May this little Christian WP community continue to inspire each other and help each other grow in faith!


  7. What a great event and opportunity to support each other. And what an amazing fundraiser!

    I’ve heard it said that life is only 10% of what happens to us. The other 90 is how we respond. You respond beautifully, inspiring so many others with your positive attitude and never-give-up philosophy.

    Liked by 1 person

  8. This very inspiring! Thank you for sharing. I believe God is honored by your faith. The Lord is a big God, way bigger than any circumstances we all face. And I know God is with you always as you fully trust in Him and His plans.

    Liked by 1 person

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