In 7 days I turn 42. I never thought I would be here still when I was diagnosed.
I want 1 thing for this B-day in addition to a kiss from Sandra: to bring in new amazing people to this fight.
To do that we have created a competition. The rules are simple:
It’s Friday, and I have amazing news to share about No Ordinary Campaign:
After 3 years of work, @noc_film will have its world premiere at the Chicago Film Festival and then play 2 nights at the Heartland Film Festival!!!
If you have not seen it yet, watch the trailer below👇.
Favor to ask: can you please retweet the tweet below so that the world can hear it and see a person with ALS.
Some call me strong. I call myself lucky. I have had time that most ALS patients don’t get.
Let’s change that, together.
I am feeling under the weather tonight, but my older daughter asked me if I could teach her about coins so she could do her math homework.
Half an hour later she had learned everything from a guy with almost no voice. We are both on cloud 9.
Good night moon.
Celebrating #NationalWorkingParentsandCaregiversDay with just a few photos from our very own at VL! A special thank you to all working parents and caregivers – we are so grateful for and inspired by your commitment and dedication each and every day.
I have not climbed more than 1 stair in almost a year. Yesterday, with help from my amazing caregivers I went down 4 and then back up 4 more. #grateful
For the next 3 days, 20% of all sales will go directly to Her ALS Story when you shop at https://t.co/pjkGZbk2Ov with the code GIVEBACK-CGOSH
It's the perfect opportunity to treat yourself or your friends to fabulous new jewelry at the same time as you support the lovelyladies
In Nov 2017 I was told I had ALS and should prepare to die. By 2018 I had decided to fight with every single breath.
This is the trailer for what happened next. I hope you like it, will share it with everyone and get ready to change the world.
Good night moon.
My voice is declining. The difference between being understood or not is 1 point on the ALSFRS-R scale. @US_FDA continues to delay approval of #ALS drugs. @SenBooker will you help?
Extremely grateful to these heroes and cannot wait to watch the film. I realize how lucky I am that @bsw5020 and @sabrevaya were well into their fight when I was diagnosed. Thank you for your bravery and dedicating your life to this cause.
Hey @US_FDA when you delay making decisions on #ALS drugs we’re getting sicker. Just one point on the ALSFRS-R scale is the difference of me being able to walk or not. My niece wants her Aunt Shelly to be mobile. #EveryPointMatters#NoMoreExcuses
We are thrilled to welcome Robert Michlewicz to the VL team! Learn more about his #fintech background and role as President at our organization: https://t.co/8Lys5H4FY1
Making a queer person feel safe at work has a little to do with policy and a lot to do with how people behave. I've heard so many horror stories from companies with great benefits and bullshit leaders.
I still remember one.
Thank you @RaganComms for including me in the Top Women in Communications list. This award is close to my heart as it recognizes my work raising awareness for #ALS. I’m grateful I found a way to use my skills to advocate for the ALS community.
#EndALS
https://t.co/2KhPcpNljK