When I read the news, I immediately started sobbing. We were about to start trach care and Evan was holding all the materials, but as soon as he saw the first tear fall, he put it all down.
“What happened? What’s going on, honey?”
I could hear the mounting panic in his voice, but I was crying too hard to type my answer – that these were tears of joy because the FDA had made the right decision and approved Tofersen, a miracle drug for people with SOD1 ALS and familial ALS. Thank God, Goddess, and Jesus Christ I don’t have either of those. I’m very, very lucky. Still I am overjoyed! I know one family who lost 33 people to ALS. They cut through generations and you’re almost guaranteed to get it.
Evan wiped my tears so I could type. “I’m so happy! Tofersen just got accelerated approval from the FDA. It’s almost like a cure for familial ALS! Everyone has been been campaigning so hard for this on Twitter. It’s a dream come true!”
I feel bad for not including him in my passion over the past few weeks, but we have been consumed by our efforts to put together a fundraiser for our dog Pickle who desperately needs veterinary care.
I go on and on. “One man was on life support and now he’s ice skating with his daughter! And another woman’s ALS clinic score hasn’t changed in 2.5 years! Mine went down every 3 months until they stopped measuring. She cooks, does laundry, does everything she shouldn’t be able to do!”
Evan raises his eyebrows, speechless.
“The FDA approving Tofersen is a huge deal for the whole ALS community because it’s the FDA recognizing a biomarker for ALS. Who knows where that could lead?! This is the 3rd ALS treatment to be approved in 6 years. Things are really ramping up! I’m not eligible for any of them because I have sporadic ALS and I’m on a ventilator, but I’m still absolutely thrilled for the rest of my community!
“I’m proud of you, honey. You contributed to this.”
“Barely. Just a few tweets and reading a lot.”
“That’s still something. I love you.”
I’m suddenly very tired. All the crying and the roller-coaster of emotion wore me out. I have a feeling this is just the first wave of joy and tears today. Evan closes the curtains and peaceful sleep takes over my Tofersen dream come true.
A big shout out to the pALS who participated in clinical trials, and to the ALS Association, which has been investing in the antisense technology Tofersen relies on for decades!
If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com