Today, we hardly have words.
After years of waiting, praying and hoping, the news we have dreamed of is finally here: the Phase 3 FUSION trial for ulefnersen, the treatment that began as jacifusen, met its primary endpoint.
This is history-making news for FUS-ALS.
What began as a desperate race to save our Jaci has now shown the potential to become a life-changing treatment for others.
Our hearts are overflowing with pride for both of our girls today. Alex, whose battle and donated tissue helped begin this story, and Jaci, who became the first person in the world to receive this treatment — with the hope that what was being tried for her might someday help someone else.
So many incredible people refused to give up on this — Project ALS, Dr. Lauren Black, Dr. Neil Shneider, Dr. Robert Brown, Dr. Frank Bennett, Ionis, Charles River, Columbia, Otsuka, and every patient and family who helped carry this forward.
Alex and Jaci — this is your day, too.
We wish more than anything that you were here to see this. To see what began with our two girls become something that may change lives around the world fills us with a pride we simply cannot put into words.
Two sisters from Iowa helped change the story of FUS-ALS. We could not be prouder to be their mom and dad.
We love you. We miss you. And today, we celebrate you.
Love you long time!
