Interview: Rebecca Luker on Life Since Her ALS Diagnosis and How She's Lending Her Voice for a Cure

Tomorrow, June 17 (8pm EDT), join three-time Tony Award nominee Rebecca Luker for At Home With Rebecca Luker, an evening of song hosted by Tony Award-winner Santino Fontana and featuring a conversation with Ms. Luker and Katie Couric. All proceeds from the special event will go toward Prosetin, the first-ever ALS drug candidate developed - from start to finish - using cells from actual ALS patients.

A highly acclaimed actress and singer, Rebecca Luker's performances on Broadway in The Phantom of the Opera, The Secret Garden, The Sound of Music, The Music Man, Showboat, and Fun Home have earned her a reputation as a foremost interpreter of the American songbook.

Last year, Rebecca was diagnosed out of nowhere with ALS, a fatal neurodegenerative disease closely related to Alzheimer's and Parkinson's. Below, she chats with BroadwayWorld about life since her diagnosis and how you can help by tuning in!

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Where did the idea for this event come from?

My very good friend Valerie Estess, who is a founder of Project ALS. I just met her this past fall but we are close friends and she's a wonderful woman. It was her idea. We keep trying to think of these little ways to support this new drug coming out, Prosetin, and project ALS who is such a good organization that pushes not only legislation in Washington, but they fund different people who are trying to do research on ALS. They're amazing.

Since singing is a little difficult for me right now, we decided on three songs, sort of like a mini-concert. We recorded it in my living room with my accompanist and I also had a bit of an interview with Katie Couric. She wanted somebody to interview me and they reached out to Katie, who was happy to do it. For a while now she's been a supporter of the effort to defeat ALS and she and I know each other, so it was sort of a natural fit. And so the evening came together! It'll be fun. We're almost up to our $50k mark, so keep giving, people!

Can you talk about the drug the proceeds are giving to?

I wish I could talk about it like a scientist, someone who developed it. I hope I'm getting this all right but the drug is called Prosetin. It's been in development, and they're not going through a drug company, which means it moves along a lot faster. They just need a little FDA approval on some things and then they can start this trial.

What the drug does is it uses cells from actual ALS patients to target the sick and dying motor neurons in the brain. That's what's happening to me right now- some of my motor neurons aren't firing or aren't working, so with the actual cellular material of the patient they can target, it's a brain penetrant drug. It goes into the brain, which has been a real challenge up until now because our brains are rightly protected by this sheath, and trying to get certain medications into the brain has been a challenge. So they finally figured that out and they've had great lab results with this drug.

It holds great promise so I'm hoping that in August I'll be able to participate in the first trial. I'm trying not to put all my eggs in one basket, but everyone suffering from ALS does not have time on their side and the time is now to push these trials and legislation.

I know that the disease effects everyone a bit differently. How has it affected your life so far?

I was diagnosed last November, 2019. I knew something was wrong before that, but until it was officially diagnosed you're sort of in denial. This disease is diagnosed through a process of elimination. There's no blood test for ALS... it's bizarre. But when all else is ruled out, then they say you have ALS. It's one of those weird diseases like that.

I was obviously crushed and disappointed and shocked by this diagnosis. My doctors tell me I'm very healthy in every other aspect. And you know, a lot of people think I can beat this. People do a respite. They reverse it. This has happened. So I'm hoping to be one of those people. I'm trying not to get weaker. The disease is progressing, there's no doubt about it. Between January and now, the last six months, It's progressed and I'm weaker. So I'm just praying I can get through the summer without too much more weakness progression until I can start doing these trials.

I know Santino Fontana is involved in the event too, right?

That came as a surprise to me! I had no idea that Santino was going to be in on this and I'm not even sure what he's going to do on the show to tell you the truth. [Laughs] Maybe he'll talk a little about ALS research, I'm not sure. But he's a great guy obviously...a Broadway shining star and a friend of mine. We did Cinderella together! He's so talented. I'm so happy he's a part of this it's amazing.

You mentioned that you'll preform three songs. Can you give us any sort of a tease?

They're all three very obscure songs. One of them I'm sure no one knows unless you bought my albums over the years. One is an old Jerome Kern song. I adore Jerome Kern. I did an album of his songs a few years back. The next two are just written by friends of mine, wonderful composers- Joseph Thalkin, who was my accompanist. Joe Falcon wrote this wonderful song with the late Marshall Barer called Billions of Beautiful Boys. It's been around for like 15 years, but not a lot of people know it. And the final song, I wanted to do some kind of tribute to New York City, which is such a great city and has sort of shown their metal these last three months and it's an amazing place. So it's called "Greenwich Time" and it's my favorite song about New York and it was written by Sam Davis and Randy Buck. It was hard to sing but it was fun anyway.

What else can people do to help, in terms of raising awareness or other places to donate?

You can educate yourself on it. Read about it. There's so much exciting research coming down the pike in 2020 but all of it needs support. You can certainly just look up different ALS organizations. There's so many. There's I AM ALS, Project ALS, which is my pet organization. I love them and they've been behind me this whole time. You can find out about Presetin there and all the other things they're working on.

And you can donate to just my show on June 17th. It all goes to the same place, wherever you donate. There's even a cute little thing on Instagram or Twitter, 'Becca's Band of Warriors', that my best friend from Georgia started. You can write to congressman and say let's push legislation that helps ALS patients. There's a ALS caucus that many of our congressman have joined so I'm trying to get Jerry Nandler to join it right now. They do amazing work. They've even got several bills across the line already in congress so it's great.

So we'll see, between congress and scientists, maybe we'll zero in on something that really helps this disease and other neurological diseases as well. If these drugs can help me they can help somebody with MS, Parkinsons, Alzheimers... I mean it's all the same thing. It's all about the brain and helping heal the brain of these awful neurological diseases.

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Go to Fundraise.ProjectALS.org/Luker to donate and register. There is a suggested minimum donation of $25. Instructions and the link to watch An Evening With Rebecca Luker on Zoom will be provided after donating and registering is complete.

Rebecca Luker's Broadway roles include Helen in FUN HOME. CINDERELLA'S Fairy Godmother, Marie. Winifred in the original Broadway production of MARY POPPINS (Tony Award nomination), Claudia Nardi in NINE opposite Antonio Banderas, Marian Paroo in THE MUSIC MAN (Tony Award nomination, Drama Desk Award nomination & Outer Critics Circle Award nomination), Maria in THE SOUND OF MUSIC (Outer Critics Circle Award nomination); Magnolia in SHOWBOAT (Tony Award nomination), Lily in THE SECRET GARDEN (Drama Desk Nomination); Christine in THE PHANTOM OF THE OPERA. With the New York City Opera Ms. Luker was featured in X (THE LIFE AND TIMES OF MALCOLM X) and was Fiona in BRIGADOON. Off-Broadway she starred in Maury Yeston's DEATH TAKES A HOLIDAY - Outer Critics Circle nomination (Roundabout, 2011), the world premiere of A.R.Gurney's INDIAN BLOOD (Primary Stages), CAN'T LET GO (Keen Company) and THE VAGINA MONOLOGUES.

Ms. Luker has performed leading roles at regional theaters throughout the country including the world premier of LITTLE DANCER by Aherns and Flaherty, Directed by Susan Stroman. Clara in PASSION at the Kennedy Center, Julia in TIME AND AGAIN at The Old Globe, Mary in HARMONY (Drama-Logue Award) at the La Jolla Playhouse and Amalia in SHE LOVES ME with the "Reprise!" series in Los Angeles.