"It's all I think about now," the 34-year-old actress tells ET exclusively, while opening up about her recent efforts to amplify research, funding and treatment options for ALS patients. Alongside her husband, John Stamos, the couple is working around the clock to spread awareness and encourage others to join their fight.
Read more below about their personal connection to the cause and what you can do to get involved.
ET: Tell us about your efforts to amplify ALS research/treatment. What exactly are you doing and trying to achieve?
Caitlin McHugh Stamos: Thanks to the ice bucket challenge, a lot of people know that ALS is a fatal disease that needs attention, research and funding. But please, no more ice. What we are doing now to help those with ALS and other rare and deadly neurodegenerative diseases is urging representatives and senators to pass bills HR8662 and S.4867 immediately. These are bipartisan bills that allow dying patients access to treatments that are stuck in trials. They basically marry the humanity of the Right to Try law with the research the FDA needs. At this moment, we have 260 representatives on board, but need to get to 291. We have seven co-sponsors in the Senate, but we need to get the word out to many more in order to get these bills passed during this session. If we don’t get it done in the next couple of weeks, there are thousands of ALS patients, including my friend Mayuri, who will not live to see these bills passed in the future. By sending emails and calling daily through our website, any US citizen can help save lives. It just takes a couple of clicks and we’re not asking for money or personal information.
Where does your passion stem from? Is it a personal connection?
I currently know two people suffering with ALS. One, recently diagnosed, and the other, Mayuri Saxena, was told she had 1-5 years left at the age of 32. She is in her 4th year of battling this disease and is now 100 percent paralyzed, on a ventilator, using a feeding tube, only able to move her eyes, with her brilliant mind completely intact. My passion and urgency of action stems from wanting to keep her alive. Seeing what she has been through, I do not want that fate for anyone else, ever. Mayuri has been an incredible self-advocate, even wrote a book about her experience called Pursuit of Happiness: From Heels to Wheels. As she started losing the ability to use her hands, and then voice, she finished writing using EyeGaze technology—so much strength and determination! Her activism was talked about in front of congress just recently when bill HR 8662 was introduced, but she needs us and anyone reading this to be advocates as well. Through this experience I have learned that WE ALL have the power and influence to bring about change and when we bring our voices together we are LOUD and can get BIG things done, like SAVE LIVES!
It's been a truly challenging year -- have the hardships of 2020 inspired you to give back even more than before? If so, how?
Most definitely. As we were stuck in our homes at the beginning of the pandemic, all we thought about was how can we help those who need it right now? Watching the news, seeing so many overworked medical staff, so many people sick and dying, so many hungry. We’re trying to help anyway we can (giving blood, making face masks, donating food and money, marching, volunteering, making and selling products with proceeds going to charity, and using our platforms to promote causes, small businesses and nonprofits.)
You've dedicated your platform on social media towards giving back and spreading awareness of causes close to your heart. Is this your focus moving forward?
It’s all I think about now. I may not have a lot to say myself, but I want to amplify the voices and the hard work of others, especially those doing charitable work and those trying to keep their small businesses alive. I’m continually trying to come up with new ways to do this.
How is your husband, John Stamos, supporting your advocacy and endeavors? Does setting an example for your son, Billy, play a role in your work?
John does everything he can. He has helped by sharing on his platforms, reaching out to people he knows who could help, and rooting us on. Doing our best to be good role models for Billy drives us. Also, wanting to make this world a better place for him and everyone in his generation.
How are you, John and Billy doing? What have you been up to?
Thankfully, we’ve stayed healthy. We’re trying to be responsible citizens, wear our masks in public, wash hands often, keep our distance. John is back to work on his new show for Disney+, Big Shot. And we’ve been working on our St. Amos Jewelry line with My Saint My Hero which will be launching a new collection in early 2021. 100 percent of the Stamos family proceeds have gone to ChildHelp, an organization that helps abused children across this country, but next year we’ll be adding a bracelet whose proceeds will go to nonprofits that support the BIPOC community. Can’t wait for you to see!
How will you spend the holidays?
In a normal year we’d have everyone we know over at our house jamming the night away, singing Christmas carols, but it will just be our tiny bubble at home this year. We're doing our best to stop the spread.