Список из самых популярных хештегов по теме #BATTENHOPE

Through the looking glass. To me, this is the world of #raredisease as a parent at the moment of diagnosis. On one side life is normal - on the other side chaotic, crazy, and wildly meaningful. Time is of the essence, friendships are vibrant, and days are full of wonder, possibilities and gratitude. I wouldn’t wish the looking glass upon anyone, but once you step through it the world of life is beautiful beyond description. #battenhope #everydayawesome #lewiscarroll #centralpark

Wow. Today at our Town Hall we had Gina Hann of Batten Hope (Battenhope.org) come and talk to us about her son and their journey, working to fund life-saving gene therapy for children fighting terminal Batten CLN7 disease. One of the products that we make here in Grand Island was used in the development of this gene therapy. Her story, her strength and her positivity were amazing to see and hear, and it really hit home to me: what we do everyday matters, our work matters, and we make a bigger difference than we realize. If you want to be a part of our team, and if you want grow your career and make a difference at the same time, take a look at our available opportunities: jobs.thermofisher.com, and don't forget that we have a Manufacturing Job Fair coming up on May 18th (http://bit.ly/TFMayJobFair) #mythermofisher #thermofisher #battenhope #grandislan #buffalo #hiring #makeadifference #careers

Exciting news - we have a #kendrascott fundraiser coming just in time for graduation! Join is May 28th at the #southlake store from 6-8pm, or call in your order to support #battenhope in our goal to give life saving therapy to children fighting Batten disease! #josephstrong #everydayawesome

Spent the day watching barrel races in the Idaho summer sun. (Isabel did great by the way!) And now I have a painful reminder of my pale Alaskan base! Anything for you Jojo and raising awareness to fight rare diseases #battenhope #everydayawesome #cln7 #treatjojo2018 #horsesofhopestables

What do you do when every bakery says they are booked through June? You do it yourself !! Getting ready for the open house BBQ for Horses of Hope Stables raising funds and awareness for Batten Hope. Blue glasses in honor of my stylish sweet nephew Jojo. They may not be perfect, but they are made with LOVE ❤️. Check out Jojo’s story and his cause at Battenhope.org Now for the frosting ...#battenhope #everydayawesome #treatjojo2018 #thisismyfamily

Could this journey be more beautiful? Inspiring? Humbling? Today I met with the #thermofisher team in #buffaloNY - these amazing friends worked on a SATURDAY to help us get the materials we needed to stay on schedule in our work for a #battendisease #genetherapy trial. This team is #josephstrong and we are so grateful to have them in our amazing #rarefamily! ❤️❤️❤️ #battenhope #raredallas #everydayawesome

Two years ago, on the eve of Ash Wednesday, we woke up to the first day of knowing that Joseph had Batten, CLN7. We received the news the day before. No cure. No clinical trial. No known research. No hope. Make end of life plans. That afternoon Dr. Minaissian from #utsouthwestern called to tell us that a geneticist named Steven Gray in North Carolina had done some research on #CLN7, and maybe there was work that could be done. A small glimmer of hope. Ash Wednesday we would wake with a new view on sacrifice, renewal and hope. This season of the Passion is one we hold especially close to our hearts. Fast forward two years, and that geneticists is building a team of experts committed to building treatments to rare genetic diseases - including CLN7. Our journey has carried us far and while we are not yet finished, we have great hope for the future. Today is a day of renewal and one of reflection - wishing you a very blessed Lenten season! #everydayawesome #battenhope

Nothing says I #careaboutrare like the lush “silk feel” of a zebra scarf. #showyourstripes you awesome friends. But please, keep it classy. #everydayawesome #battenhope #rarediseaseday

#SHOWYOURSTRIPES CHALLENGE! Do you #careaboutrare? I do! Post a pic today #rarediseaseday of your stripes with an #icareaboutrare and a #battenhope!