OmahaNebraska.com Interview with Amy Byer Shainman- Executive Producer, “Love, Danielle”
Omaha, Nebraska.com here with …
Amy Byer Shainman
Thank you. It was lovely meeting you here and totally wonderful and unexpected.
Please tell me why you’re here in Omaha.
Totally. I am here for the Omaha Film Festival and my film. “Love, Danielle” which is screening [at] Aksarben Cinema, Sunday 11:45.
That’s why I’m here. I’m here to represent the film, and we’ll do a Q & A after a little bit with me so we can answer any questions or anything anyone wants to know.
I’m very excited to be here.
We’re excited to have the festival and very talented people like you coming.
Please tell me about the film a little bit and then that difficult spot we talked about earlier.
Oh, sure. “Love, Danielle” is the first ever scripted feature film that addresses the issues and decisions faced by a BRCA gene mutation carrier who has not been diagnosed with cancer.
However, there is comedy infused really to make it more palatable for the audience and also because there is humor in everything, even cancer.
I think it helps people digest information more easily when they can laugh about something that is maybe a little bit more serious.
So the logline, would be amid family dysfunction and drama, a woman who carries a BRCA1 gene mutation must decide whether she should remove her breasts and ovaries to reduce her cancer risk.
That’s basically our logline. And the film is scripted, but it’s based on our lead actress, Devin Sidell, who is the writer, producer and lead actress in the film; it’s based on her story because she is a BRCA1 gene mutation carrier.
And she started writing the script because she realized, “Hey, there’s really nothing out here there that addresses this.”
And for her own [reasons], it was cathartic for her. And it was a combination of wanting to get this information out there and for her self-processing it.
That’s why she started writing it
Please tell us a little bit about the mutation and what the acronym stands for.
Yes. Okay, BRCA. There are over 50 hereditary cancer syndromes and many genes out there.
BRCA, breast cancer gene. We all have BRCA genes. BRCA1 and BRCA2, we’re all born with them. You get two BRCA1s from your mother, two BRCA genes from your father.
You get two BRCA2 genes from your mother, two BRCA genes from your father.
And what? I’m also a BRCA1 gene mutation carrier. We can go into that. That’s why, that’s part of the reason I got involved in this.
What happens is it only takes one mutated gene to have the condition where you are a BRCA carrier.
It’s an autosomal dominant condition. So basically, I have all of my BRCA1 and BRCA2 genes from my mother are working fine.
They’re all, you know, great. I have three out of four from my father that are working.
There’s one mutated gene on the BRCA, one that is mutated and not working.
And so those are tumor suppressing genes. They’re tumor suppressing genes. What that means is they protect you from getting cancer.
If you are born without the protection of, if you’re a mutated gene, you’re born without protection of one of those genes.
You’re born with an innately, an inherited increased risk of having certain cancers or developing certain cancers.
Well, I mean, I’m not a certified genetic counselor or a physician, but this has been my passion, my advocacy since about 2008, 2009.
And I happen to know a lot more than the average person.
That’s what I say, so I can speak to the subject matter.
How did you discover that you had the gene?
Yeah. So how did you go? Both of. Yeah, I can definitely talk about all of that. [In] 2008, my sister was diagnosed with both ovarian and uterine cancer. She was 48. And from there I won’t go. I’ll skip over a lot of the detailed details, but subsequently we found out that she carried a BRCA1 gene mutation because she ended up having genetic counseling and genetic testing.
She had to demand that, though, because it wasn’t just automatically given to her.
She basically went to an ovarian cancer conference and saw that she had the red flags for this, you know, BRCA and hereditary cancer syndrome, which h…
Do you want me to give you the red flags? Sure. She was under 50 when she was diagnosed. She had two separate primary cancers, and she was of Ashkenazi Jewish descent.
Because it’s. Now, mutations can affect all ethnicities, but if you’re certain populations, for example, Ashkenazi Jewish populations have a 1 in 4.
You have a 1 in 40 chance of carrying this mutation.
The average population out there has a 1 in 200 to 400 chance.
So that’s a 10 times higher risk. Certain Bohemian populations have a higher risk.
They’re French Canadians. There are certain populations because of isolation or where they have higher risk for carrying these mutations.
Once she found out she carried this mutation, that meant that each of the siblings had a 50% chance of carrying it as well.
We had the same mother and same father, so I had to undergo genetic counseling and testing and found out that I do carry it.
And then it was this whole thing of, what does this mean for me and what does this mean?
I had no idea, and I couldn’t find any resources out there.
I found one book by a woman named Jessica Queller called “Pretty is What Changes”.
She’s an actual writer in Hollywood as well, and she wrote a book, and that was the only way that I knew how to talk about it.
And then I got really angry because of what didn’t happen with my sister’s situation and how we had to find out about all this.
Because what I learned was genetic testing had become available – clinical genetic testing for these mutations had become available 12 years prior to her diagnosis.
I became very angry and was like, why weren’t the dots being connected? I didn’t understand it, so.
And stop me. I can go off on tangents.
I think this is more of a story than than only focusing on the film because it’s helping people. … The point of the movie. Right. Is to bring people this knowledge… and hopefully save some lives in the process with the information and…
Basically, we want people to prioritize their health, pay attention, and start having those conversations and be their own advocate.
The other thing was we then realized it became this epiphany of, oh, my grandmother, who I never met, died at 33, and it was my dad’s mom.
It was this whole epiphany. I know. I get chills thinking about it, because he was an only child.
He had lost his mom when he was 7. Raised by a grandmother and a father, no siblings.
There wasn’t a lot of communication going on. We’re talking, she died in 1934. This was so many years ago. I don’t even think he knew much about what was even wrong with her.
I mean, we never had had discussions, really, about it.
My sister seemed to think she knew that maybe my grandmother had breast cancer.
I mean, there were conversations about it. So. But we have this big epiphany of, oh, and then. And in my book, I show them. I. I ended up finding medical letters and I show those in my book.
That’s a whole other kind of story. But the puzzle pieces in our own family started coming together.
It was like, wow, she died when she was 33, and it was clear that it was breast cancer.
And she, most likely, from the medical letters, had ovarian cancer as well.
What can people do to learn about this? … Be educated … Resources.
Yes. Yes. Okay. Absolutely. Well, obviously, if you have any sort of concern that you have an increased risk for certain cancers, whether you have a family history.
I mean, it’s important if you have a family history, that’s important to note.
You start, you just start having these conversations with your family at Christmas, Thanksgiving, holidays, just opening up, hey, why did Aunt Donna die?
Tell me more about that. Or was Uncle Bill really sick and how old was he when he died?
Like get a little bit more and maybe more out-of-the-box questions like are you sure that it was food poisoning that he had? And when he was in pain and then he didn’t come out of the hospital or that she had.
Was it ovarian? You have to really ask the higher level questions, but also the most important thing … and bring it up to primary care providers and OBGYNs.
However, they’re not always trained in medical genetics and they’re not always.
And doctors are wonderful people, but we have to advocate for ourselves.
So, I always say the most qualified health care provider to assess your cancer risk, to order any genetic tests, if necessary, if they deem necessary, and then interpret those results would be a certified genetic counselor.
And doctors don’t necessarily always refer out to those.
So you have to be …
… Curious. Explore this.
Yes. And at the end of the the film, we do give that resource. Yes. Because where do people go? What do they do after they see this? We give some resources. I thought that was very important to do so, like nsgc.org. That’s the National Society of Genetic Counselors.
You can find a genetic counselor through their website.
It’s in person or telehealth. There are also other organizations out there. I am known as BRCA Responder on social media. [https://www.facebook.com/BRCAresponder , https://www.instagram.com/brcaresponder/] And I always have a plethora of resources and everything.
Instead of listing, instead of me listing all these individual resources, it’s better just to.
… go to my blog or my website [https://thebrcaresponder.blogspot.com]. My blog actually has all the resources, but I think on my webs, on my website it has the link to the blog.
… The best thing people can do is start writing down their family medical history.
If there’s anything glaring, start having those conversations with their family.
And even if you’re not sure, don’t try to interpret it yourself.
That’s when you, you know, have someone who is trained to interpret what all of this means.
And there are programs out there. There are programs. I mean, I guess I can mention a few. You know, you have to go All. Because all genetic testing is not created equal.
And it’s really important to go. If you do clinical genetic test, I’ll direct to consumer.
Genetic testing is definitely not created equally. You have to make sure it’s clinical genetic testing.
So. Thank you. Oh, my gosh. Thank you. Oh, my gosh. Huge. This is. This is the huge piece of everything that we’re doing.
You’re – her story, the other lady’s story.
Yeah.
Stories of people that we don’t even know their stories. You’re going to change the course of their families and their stories.
I’m emotional because I love. And that’s why I love that it’s not a documentary too, because documentaries are, you know, it’s kind of like going to a doctor’s office.
It’s very factual, and it can be. They can be entertaining, but it’s a different experience when you’re just watching a scripted film and it’s just easing into your subconscious without you really even knowing that.
All the medical information and the dialogue and the actions in the film were fact checked.
I did it with a certified genetic counselor and two physicians, so that was really important to me.
But, of course, it’s, Hollywood. It’s a script. So, you have to edit out. There were things we had to leave out and just put in a box a little bit. We didn’t delve completely into the whole fertility aspect.
We just said, okay, I have an appointment for you with a great fertility specialist.
You can’t cover everything. You have to when it’s a script. We touch upon certain things, but, you can’t delve.
Learn more about this mutation and being diagnosed on her blog at https://thebrcaresponder.blogspot.com
Don’t forget to see her movie, 16 March at 11:45 AM at the Aksarben Cinema!
Get tickets here:
https://off25.eventive.org/films/love-danielle-67a2bb7c7bc4b36063695317
Sunday, March 16, 2025 – 11 :45 AM
Aksarben Cinema
2110 S 67th Street-
Omaha, NE 68106
