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Home > First Radicava Recipient in Texas Hopes Others Will Benefit from New Drug Too

First Radicava Recipient in Texas Hopes Others Will Benefit from New Drug Too

by | Sep 19, 2017

Lois is a wife, a mother of two girls, and grandmother to seven grandchildren.

After 46 years of teaching, Lois Albright retired, and she and her husband moved from their home in Brenham, Texas to Austin to be closer to family. Her daughters had been encouraging her to retire for many years, but she loved to teach.

“People who retire just get sick or have bad things happen to them,” Lois would say in response.

Just a few months after she retired, Lois was diagnosed with ALS in February 2017 – on Valentine’s Day.

Who would’ve thought?

“What was really striking for me when my mom was diagnosed was that there’s just no hope for people with ALS,” said Allison Gorrebeeck, Lois’ oldest daughter. “There’s just not a lot of options for people with ALS.”

Things progressed quickly for Lois. At the end of April, she got a feeding tube and a ventilator, and her speech had begun to deteriorate.

Then in May 2017, people with ALS were given a new dose of hope when the FDA approved the first drug for treating ALS in 22 years.

And Lois and her family became even more hopeful when she was told she’d be the first person to receive treatment in Texas.

“This is a disease where people are literally left speechless,” Allison said. “So we had to do a lot of work on Mom’s behalf to get her this medicine.”

Radicava is administered by an intravenous infusion. The first dose requires 14 days of infusions and then 10 days without. From then on, a patient receives an additional 10 infusions within a 14-day period, and then another 10 days off. According to MT Pharma, the drug has been demonstrated to slow decline of physical function in ALS patients by 33 percent.

Lois finished her first round of Radicava infusions with a celebration.

“It gives me a lot of hope and comes as an answered prayer,” Lois said. “But I so want other people to be able to get [Radicava] as well.”

Lois is a very content person. The three things on her bucket list are to live life and spend time with her family, to have a big 69th birthday party with her friends, and to help other people living with ALS.

On June 23rd, 16 of Lois’ friends visited her in Austin to celebrate her 69th birthday.

She is still able to drive and continues to take her grandchildren to soccer, football, basketball, and piano. She also enjoys crafting, trying her hand at painting, and sewing. Her latest project has been creating adult bibs for other people with ALS.

“I am fortunate in that I can control my hands,” Lois said. “When I went to the ALS clinic, I saw that a lot of other people have the form of ALS that affects their extremities first. Since they can’t use their hands, they have difficulty feeding themselves, so I’ve decided to make bibs for both men and women.”

She also really enjoys planting flowers and working in the yard, but it can be a struggle because she gets short of breath. The most difficult part of ALS for her right now is her trouble with speech and breathing.

“This is not at all what I had planned for retirement, but God had something different,” Lois said.

Sharing her story is important to Lois. She wants to bring ALS to light so that other people can get more help, just as she has through Radicava.

“Radicava gives us some hope,” Allison said. “If this can help slow down the progression of her ALS, it’ll give us a little more quality time.”

Maybe a little more time to check things off her bucket list too.

Lois and her family will be participating in the Walk to Defeat ALS in Austin in November as Team Love for Lois. Click here to register for a walk near you.   

How ALS Patients Can Help

Once you’ve been diagnosed with ALS, it’s easy to feel like you just don’t have many options, but there are ways you can make a difference.

How You Can Help People With ALS

We all have a part to play in the fight against ALS! Your generous support funds critical research for better treatments and a cure for this disease. Here are a few ways you can help: