And this video and a short article were on Rolling Stone today too HERE.
What is so exciting about Dr. Tolar's work is that it could not only be the answer for EB sufferers but for sufferers of thousands of genetic diseases. How quickly could we get to five million if we just got the word out and everybody gave a little? I'm so thankful that Jonah was born at such an active and amazing time in terms of EB research. I truly believe I will see a cure in his lifetime. And I'm praying it's much sooner rather than later.
6 comments:
I am a HUGE Eddie Vedder fan and a HUGE Pearl Jam fan and have been following your story for years. Makes me so happy to see him and his wife advocate for EB! My dad has Parkinson's and when Michael J Fox came forward with it and started advocating, it was huge. I hope the same happens with EB. And EV is such an awesome human being!!!
Amazing!!!!!
Pearl Jam was in Minnesota yesterday and visited the U of M while advocating for EB!
http://bringmethenews.com/2014/10/20/pearl-jams-eddie-vedder-visits-u-of-m-childrens-hospital-brings-doctor-on-stage/
http://m.today.com/health/eddie-vedder-brings-doctor-onstage-honor-his-work-children-1D80227641?adbid=10152829546371350&adbpl=fb&adbpr=12566691349&cid=sm_t_main_1_20141020_34101147
Awesome move by Pearl Jam! What exposure to the U of M and the doctors working so hard to find a cure for EB! Wish I had been there last night to witness and give credit to those working so hard so that Jonah can see a cure in his lifetime! Love that you are updating more frequently. Missed you and the kids!
Not sure if the link will work, but in British Columbia Canada they featured a teen with EB. If the link I've included doesn't work, check out the on-line news:
www.theprovince.com today.
http://www.theprovince.com/News/ottawa/unreal+Jonathan+Pitre+believe+public+response+story/10352770/story.html
Post a Comment