Living With FA – FAmovement.org

Living With FA

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May 18, 2020 is #faawarenessday so in honor I’m

May 18, 2020 is #faawarenessday so in honor I’m flexing for FA for the @lend_us_some_muscle campaign, helping us all the way from Australia. Follow the link in their bio if you can make a donation!!! Friedreich’s Ataxia is a rare inherited disease that causes progressive nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time.

The Signs & Symptoms of Friedreich's Ataxia are:

loss of coordination (ataxia) in the arms and legs
fatigue - energy deprivation and muscle loss
vision impairment, hearing loss, and slurred speech
aggressive scoliosis (curvature of the spine)
diabetes mellitus (insulin - dependent, in most cases)
serious heart conditions, including hypertrophic cardiomyopathy and arrhythmias

The quarantine has definitely been physically messing me up but #noexcuses
#curefa #lusm2020

Over $70k raised at RideAtaxia SoCal! Thank you to

Over $70k raised at RideAtaxia SoCal! Thank you to all the people who donated and came to support us at @rideataxia ! We are one step closer to a treatment and cure for FA!
#cureFA

10 more days until RideAtaxia SoCal! Great event t

10 more days until RideAtaxia SoCal! Great event to raise awareness and funds for FA research through FARA! Support/join the FAM team through the link in my bio! I hope the weather is good on February 22nd in Huntington Beach!

Some of the pictures I got from a great weekend in

Some of the pictures I got from a great weekend in Philadelphia. Seeing some of my FAmily again made me smile! We definitely missed our brother @seanbaumstark #curefa #friedreichsataxia

FAmily in my city. We had a blast at the #2019ggsu

FAmily in my city. We had a blast at the #2019ggsummit Thanks @curefa_org and @globalgenes See you again next year! #careaboutrare #curefa

Repost from @vipneurorehab - Vlad hard charging hi

Repost from @vipneurorehab - Vlad hard charging his workout by adding a weight vest!!! Brian, like all our staff, push people to their limits to assure they are getting the absolute most out of their time with us.
#vipneurorehab. #neurorehab #ataxia #weightvest

Today is FA awareness day. It sucks but I fight it

Today is FA awareness day. It sucks but I fight it. I’m trying to keep my body moving so I can possibly slow down the progression of the disease. I don’t lift like I used to but I’m still working my body out. #lendussomemuscle #lusm2019 #curefa @lend_us_some_muscle

Spreading awareness at the functional food confere

Spreading awareness at the functional food conference again, but this time I had Dr. Elisabetta Soragni, staff scientist from Dr. Gottesfeld’s lab at the SRI giving a presentation on FA. Thanks @jasminemartirosyan for having me, and thanks Liz for presenting. #mylegsaretoolongforthischair #friedreichsataxia #rare #curefa

Last year I got a handcycle from this scholarship.

Last year I got a handcycle from this scholarship. It is fantastic for any Ataxian to go out and get freedom and independence from these bikes. Unfortunately, I’m having trouble with my brakes so I can only use it with my trainer at home. #Repost @rideataxia (@get_repost)
・・・
📣 Calling all Ataxian Athletes! If you'd like to have the opportunity to own your own adaptive cycling equipment, applications for the 2019 Ataxian Athlete Initiative (AAI) are open 🙌!
•••
You can find the application here 👉 curefa.org/aai or in our bio!The deadline is less than a month away - May 16th, 2019! 🗓 #CureFA

NAF(National Ataxia Foundation) AAC2019 in Las Veg

NAF(National Ataxia Foundation) AAC2019 in Las Vegas. Thanks for coming and helping me @ger_the_mann #greattimewithgreatpeople #ataxia #curefa

Today is #rarediseaseday, celebrating and bringing

Today is #rarediseaseday, celebrating and bringing attention to the over 350 Million people living with rare disease. That’s more people impacted than cancer and AIDS combined! 50% are children, with 30% of those children never getting to see their 5th birthday.
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Graphics by National Organization for Rare Disorders, Inc. (NORD), Rare Disease Day, and Global Genes
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#careaboutrare #raredisease #rarediseaseday2019 #curefa

@rideataxia SoCal was awesome once again! Thanks t

@rideataxia SoCal was awesome once again! Thanks to those who donated and attended! I have the best friends and family! Thank you for letting me push myself further than last year, even though I kept stopping and resting! I didn’t get to see most of my FAmily, but love you guys. #cureFA

I would love it if you could join my team in Hunti

I would love it if you could join my team in Huntington Beach, but if you can’t make it, please donate to Friedreich’s Ataxia research. Link in bio. #cureFA

Can’t wait for the beautiful ride in Huntington

Can’t wait for the beautiful ride in Huntington Beach. Join my team FAMovement! Or donate to FARA to continue the search in finding a treatment/cure for FA! #socal #cyclingevent #bike #curefa Link in bio

As many of you know I was diagnosed with a rare di

As many of you know I was diagnosed with a rare disease when I was 9 called Friedreich’s ataxia. My life was turned upside down and spun around a few times! In the beginning I was ashamed, I was scared, and I was lonely. now I have turned my devastating diagnosis into something positive. I am so blessed by the things that I’ve learned, the fellow FAers that I’ve met, and the helpful hearts I have seen so many people have!
I’m sure everyone remembers the ALS ice bucket challenge. It was a social media campaign that blew up on the Internet. It brought so much awareness to the illness that so many people live with.
Well now it’s FA’s turn. Let’s take this terrible disease and turn it into a positive by writing on you hand #gratituderelay and in the palm of your hand write something you are thankful for. After you are done post your video on social media and tag three other people to participate in #GratitudeRelay you have 48 hours to complete your leg of the race and pass the baton!
Follow the instructions in the comments and then go to www.Gratituderelay.com and learn more about the relay to help cure FA! I tagged @shirastrongin , @taylorkane23 , and @joeymullaney1 because of what they do for the rare disease community.

Let’s make this HUGE!
Even if I didn’t tag you, please participate in the relay!

Come see the FAM and do some holiday shopping at @

Come see the FAM and do some holiday shopping at @kendrascott in Fashion Valley on December 15th from 2-5pm, and they will give 20% of sales to @famvmnt ! #fashionvalley #fundraiser #sandiego #2ndtime #supportresearch #xmasshopping

My time in Pennsylvania at the FARA ambassadors me

My time in Pennsylvania at the FARA ambassadors meeting, rideATAXIA raised over $312,000 for Friedreich’s Ataxia research! And the knowledge learned at the CHOP symposium puts hope into action with proven research. Every FARA event raises hope and awareness for FA, but these events with these amazing people will take the hope and turn it into faith! Together we will #curefa

Water day😂🏄🏊 with @jeffrose3847 who also

Water day😂🏄🏊 with @jeffrose3847 who also has FA and is awesome, thanks to Bob and everyone who helped @surfingmadonnabeachrun ! And friends who helped! Great time with great people! #wehavefabutfadoesnothaveus #curefa

Come to @thehillspub on Wednesday, August 8th from

Come to @thehillspub on Wednesday, August 8th from 5pm-9pm for a ten percent giveback. Have some good dinner and beer in La Mesa and contribute to research in FA while doing it! #curefa #curefa #sandiego #sdevents #lamesa

Had a great screening of the Ataxian with some gre

Had a great screening of the Ataxian with some great people! We missed you @kyleabryant who was at rideAtaxia Chicago, but Nate Adams(producer) and @seanbaumstark we’re able to come! Thanks to everyone who came! I hope you enjoyed the movie and understand how FA differs in everyone affected, if not you should buy the movie to learn.😊 #sandiego #movie #documentary #curefa

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