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Meet Elisabetta (Liz) Soragni
in the first #MeettheResearcher interview. Liz shares her journey in FA research, how she got her start in FA and now her new position at FARA
. Follow the link to read more
http://bit.ly/398mSoY .pic.twitter.com/oaDWXA01IX
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Happy February!
There are SO many exciting and fun events going on this month
. Check out one of the local events in your neighborhood
. Tag and share your pics
via social media with us using the
#CureFA and#FAAwarenesspic.twitter.com/OInGoiJGiv
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FA Research Alliance proslijedio/la je Tweet
You can make a difference in a child's life by asking
@SecAzar to keep the wheels moving on newborn screening. Join@RareDiseases in asking that the federal advisory committee resume work.#ACHDNC#CureFAhttps://twitter.com/RareDiseases/status/1222196646177640450 …
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Sponsor Spotlight
We are grateful to @Outback who has been serving the ride since 2010 in SoCal
. Thank you for your long standing commitment to curing FA
. We look forward to the delicious food awaiting us at rideATAXIA SoCal
. See you at the ride
#rideATAXIASoCalpic.twitter.com/wYDPTNZVlP
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Meet Lily Pierce
in this weekly #MeettheCommunity interview series on the Ambassador Program blog. Lily enjoys exercising
, going to church
, serving the community
, and spending time with her fiancé
. Follow the link to read more
http://bit.ly/36pkUyA pic.twitter.com/rTJX1bOD5V
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Check out our January 2020 monthly update for the latest in FARA news including research, events, ongoing clinical trials and studies
. Click the link here
http://conta.cc/2uqxZL5 .pic.twitter.com/WHe4o0BQju
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FARA is supporting a Phase 2/3 clinical trial sponsored by Retrotope. This trial involves the study drug RT001 which may protect against lipid peroxidation, believed to cause disability in many neurodegenerative diseases
Please contact Sarah Endemann: sarah@retrotope.compic.twitter.com/hCykADJtm3
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FA Research Alliance proslijedio/la je Tweet
Redefining Innovation in
#RareDisease panelists Saba Sile@HorizonNews, Jennifer Farmer@CureFA_org, Stephanie Fischer@rdmd@RarePOV, fielding incredible, thought provoking questions from our audience.pic.twitter.com/fGwRrmUD8Y – mjesto: Pennovation Works
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Join our first Teen Hangout of the new year! This month will be led by Madelyn Frederick
. Teen Hangouts are a great way for teenagers with ataxia to connect and share their experiences
. This month’s topic is “Do you have pets?”
.
http://bit.ly/36aOvMf .pic.twitter.com/SSWURHWmH0
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Meet Hasitha Illa
in this weekly #MeetTheCommunity interview series on the Ambassador Program blog. Hasitha enjoys writing
, listening to music
, and spending time with her friends and family
. Follow the link to read more
http://bit.ly/30AQVCP pic.twitter.com/PTlilJKlRa
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FA Research Alliance proslijedio/la je Tweet
Brigid Brennan of the Friedreich's Ataxia Research Alliance discusses research about Friedreich’s ataxia.
@rideATAXIA@CureFA_org@MDAorg Voices of Friedreich's ataxia Friedreich's Ataxia Support Grouphttps://checkrare.com/fara-focused-on-funding-research-for-friedreichs-ataxia/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
The FARA Ambassador Program will host the first FA Hangout of the new year on ‘Getting Involved with FA Research’
. Want to get more involved? Want to host a fundraiser or stay up-to-date with current research? Let’s talk about it!
http://bit.ly/365DhZD pic.twitter.com/xU9Z4MPaqs
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FA Research Alliance proslijedio/la je Tweet
Brigid Brennan of the Friedreich's Ataxia Research Alliance
#FARA discusses Friedreich’s ataxia#FA, a degenerative neuro-muscular disorder.@Friedreichsatax@CureFA_orghttps://checkrare.com/friedreichs-ataxia-2/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Cheers to the new year! When you stop by your local @World of Beer now through March 31st, they will donate $1 to the Friedreich’s Ataxia Research Alliance (FARA) for the sale of every Guinness, at participating locations!
Click here
http://bit.ly/36k300E pic.twitter.com/aXXB4RbQeA
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FARA’s Chief Executive Officer, Jen Farmer will speak on a panel titled the ‘Redefining Innovation in Rare Disease Drug Development’, hosted by 1776 & @HorizonNews on January 22nd at 5:30pm. Click the link to learn more and to RSVP
http://bit.ly/2ZZNLrM .pic.twitter.com/AK6BbIT6rj
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Meet Rishipal Singh Hura
in this weekly #MeetTheCommunity interview series on the Ambassador Program blog. Rishipal enjoys exercise/stretching
, enjoying good food
, and spending time with his family
. Follow the link to read more
http://bit.ly/2TquuPf pic.twitter.com/b2sUJ8Z55X
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
FA Research Alliance proslijedio/la je Tweet
Exciting news! We're patterning with
@CureFA_org on a course for their ambassadors. https://salemoaks.com/clinical-trial-protocols/ …pic.twitter.com/fbzv4oUv1T
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FA Research Alliance proslijedio/la je Tweet
So lucky to be a
@CureFA_org Ambassador with this great learning opportunity from@SalemOakshttps://twitter.com/SalemOaks/status/1215303583756890118 …
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FA Research Alliance proslijedio/la je Tweet
Thank you to our great community and all the volunteers that helped makes this event possible.
@CureFA_org@USIBaseballhttps://twitter.com/NCAADII/status/1215745395273404416 …
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FA Research Alliance proslijedio/la je Tweet
We are very excited to work with the Friedreich's Ataxia Research Alliance (FARA) Ambassadors in the coming months to help them become even stronger partners in
#clinicaldevelopment.#pinksocks#patientengagement#caregivers#a…https://lnkd.in/eR8ZjfK https://lnkd.in/eCRvK8gHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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