Omaha Film Festival Interview: Amy Byer Shainman- Executive Producer, “Love, Danielle”, Part Two

OmahaNebraska.com Interview with Amy Byer Shainman- Executive Producer, “Love, Danielle”

Amy Byer Shainman- Executive Producer, “Love, Danielle” with painting in background

Please tell me a little bit of what you did before now and …

And how I got involved. Once I got angry and frustrated about what didn’t happen with my sister, it fueled something in me where I couldn’t go to sleep at night, or live with myself, if I didn’t start speaking up and sharing because I felt like I had these gold nuggets of life saving information that no one knew about.

How can people not know? How can people not know this? This is available and I didn’t know about this. And I consider myself a college educated woman.

The genetic testing has been around for 12 years and her top notch, her world renown physicians weren’t even bringing this up. They were worried really about the acute care and saving her life, which we appreciated, but the other puzzle pieces weren’t being put together. [They didn’t consider] what it meant for her because she was then still at risk for breast cancer.

It’s very important if you’re a BRCA gene mutation carrier, or any other gene mutation carrier, to have a manager.  I have a high risk oncologist who manages me and makes sure I get my blood work done. I get monitored for CA 125 and CA 19-9, which is pancreatic.

I should make sure I’m going for my colonoscopies.

In EUS, they do a clinical breast exam still on me. Even though I’ve had a mastectomy and reconstruction, I still get a clinical breast exam every six months because things can pop up. It takes one piece of breast tissue that was left somewhere. You have breast tissue all the way back here (indicates side of torso).

It’s very important to advocate and have a manager, who is monitoring your whole being.

I literally have a medical binder I bring with me to appointments.

I underwent preventative surgery in 2010. I had my ovaries, a full hysterectomy, a total hysterectomy, everything out. Later that year, I had a prophylactic bilateral mastectomy with immediate breast reconstruction. I did that because my cancer risk was as high as 87% in my lifetime.

Coupled with seeing what my sister went through and seeing her in the pain of ovarian cancer, knowing what the mutation meant, knowing my grandmother died when she was 33 and I was … 40 at the time. I was past the age of the guidelines where you were to have these surgeries.

I’ll infuse that here. The guidelines, the NCCN [National Comprehensive Cancer Network] guidelines are if you’re a BRCA1 carrier to have your ovaries [and] fallopian tubes out between ages 35 and 40. I was 40, so I feel like I was on the tail end of those recommendations.

I was, as we say in the film, a ticking time bomb.

I already had two kids. I was very fortunate. I felt so lucky. I had evaded a cancer diagnosis up until that point.

I’m so lucky (not to say that surgeries were easy). They weren’t. After that I had my surgeries and basically named myself a BRCA responder and became very involved in advocacy.

[I] was doing nonprofit stuff for a while, and then Angelina Jolie came out with her announcement. Do you remember that? In 2013, she came out with the announcement that she was a BRCA1 gene mutation carrier – [the] most beautiful, famous woman in the world.

And it was like, oh my gosh, we have our champion. This is amazing. And simultaneously, the Supreme Court overturned the patent on – it was May of 2013, I believe – the gene patent held by Myriad Genetics. Genes can’t be patented. It was a huge win, meaning that the cost of clinical genetic testing went down drastically because there was now competition in the marketplace.

Something that people don’t seem to notice or understand – how critical legislation and court cases are not just for having an opportunity for your business or for this or that but for life itself.

It’s really important [to know that] all genetic testing and direct consumer genetic testing are not created equal. … That’s really important. [It’s] why you go through a genetic counselor, so you’re making sure you understand who the test company is. They know the insurance companies. They know the best laboratories. They know how to interpret your results, and how to assess you.

So that’s why I always say, go to a professional. I always say, you don’t go to a podiatrist if you have a heart condition, vice versa. You don’t go to a cardiologist if your foot hurts.

What did you do before and how did you meet the writer and actress?

What did I do before?

I am always curious how people’s journeys towards where they are now helped them.

I was always kind of what I call creatively fickle. Always. I took film in college and songwriting and music, all of my electives. I was a communication major. I studied songwriting privately and music theory. I sew. I do crafts. I do [it] all. I have a need to be creative and also [have] a very philosophical side.

And I’m not shy. I was in theater and just gregarious. I’m sort of a gregarious loner. I’m out there, but I like my alone time.

Basically, after all of this happened and I was done with nonprofits and after Angelina Jolie came out with her information, I had my own epiphany of how I can I get this information out there on a global scale – as big of a scale as I can.

When I started going through my surgeries in 2010, that’s when I started to write my book. I started to journal and I had this idea. I’m going to journal because this stuff is important. Maybe it’ll be a book, maybe not. That process took eight years, so my book didn’t come out till 2018.

I started writing in 2010, but then I asked, how can I even go on a bigger scale? And then I was like, movies! Epiphany!  My first project was called “Pink & Blue: Colors of Hereditary Cancer” (2015).

I got connected to a guy named Alan Blasberg who was working – a great director, Alan Blasberg – working on a documentary about his own experience. So, I came on. I executive produced that. That was a great experience and total documentary though.

I was hooked and got involved with a couple projects with my college roommate. My college roommate is Leslie Osborne, who’s a fantastic actress, producer, writer, [and] director. She’s amazing. She’s a quadruple threat. And she’s married to Paul Osborne, who’s another director. He’s had films play at many film festivals and I got involved in some of his films too, kind of behind the scenes.

I became hooked on this medium of film because people are very visual creatures. Wow. We can really entertain, educate, empower people through film and visual arts in a way that we can’t do it by a doctor just sitting there lecturing, going to a class and lecturing away. A documentary even, you know, more than a documentary form. I thought, wow, this is really, a really cool thing we could do, have a trickle down effect. I got involved with Devin in this project, Segue. how I got involved in this project.

I was very active on Twitter. It was really big and did a lot of tweet chats and educational things.

…  Devin had posted something about breast cancer.

And since I’m the BRCA responder, I saw it. And I said, “Hey, by the way, I see you’re working on this project.” It wasn’t even titled at the point. It was just a project about BRCA carriers. Of course, I was like, “Oh, what is this? I would love to consult because I’m very passionate about things in the media and things, you know, in the arts and everything getting out there accurately just anywhere.” If you’re gonna do it, you know, let’s get it done right. I said, “I’d love to just consult and make sure everything’s done right.”

Simultaneously and serendipitously, my friend Paul Osborne, who I was just mentioning, was at the Phoenix Film Festival and met Devin’s co-writer. Got into a conversation with her co-writer and found out what the movie was about. And he said, “Oh, well, then you need to get Amy on board and talk to Amy, because she’s the BRCA responder.”

And so it was serendipitous. I don’t even know if you ever knew that story. And so initially I came out as a consultant, and of course, my personality is what it is, and end up executive producing the whole thing.

I’m open to feedback and I’m open to other ideas, but I definitely have strong opinions about things being good.

It’s good to listen to all those things, but it’s important to not continually pivot.

Yes.

Or pivot wrong.

Yeah.

They tell people in business to listen to their customers …  but you shouldn’t do everything that they want because it might not be good.

Exactly.

So you have to find that kind of balance, and then your experiences and everything else is what’s going to make it.

Yes. This project was too important to not be a part of and not get it done right.

Where did you film it?

The pandemic threw a wrench in a lot of people’s plans with everything in life. We started filming and then had to pause and then started filming. Things weren’t working. Did some reshoots. It took a long time to do this film, so it was really five to six years.

It was a long time. The original script doesn’t even look like the finished project because went through so many different permutations. But where it landed, I’m very happy with. It’s been exhausting, but exhilarating to finally see where it’s landed.

The cast.

We’re very fortunate with a fabulous cast. We have, obviously, our lead actress, Devin Sidell, and Jaime King. Jaime King [has] been around forever. She’s fantastic in this role. It’s a must see performance. At Garden State, they were nominated. [Jaime} was nominated for Best Supporting Actress. Devin was nominated for support for Best Actress at Garden State Film Festival.

We’ve got Barry Bostwick. Barry Bostwick is fantastic. He was nominated for Best Supporting Actor for the Garden State Film Festival. People would know him from “The Rocky Horror Picture Show”.

And obviously the iconic and wonderful Leslie Ann Warren, who …going all the way back to “Cinderella” (1965). She was nominated for an Academy Award for “Victor Victoria” (1982).

So we have an amazing cast. We also have Raymond, Raymond Cruz from “Breaking Bad. In “Breaking Bad”, he plays a really terrible, mean character, drug dealer. He plays Tuco. And this is a total departure, complete departure from that character. I love the casting in that, especially because I can say he plays a male BRCA gene mutation carrier sitting in a waiting room waiting to get a mammogram. Here he is, this tough guy, and I love the juxtaposition of that because it’s those things that change the narrative.

and let people know that it can be anyone.

Exactly. Exactly. We got Kim Coles, Kelly Jenrette. We’ve just got a great cast and their performances are outstanding.

Do you want me to tell you the film festivals we’re going to be playing at?

Sure!

Okay, so we’re playing here at Omaha Film Festival this weekend, Sunday, March 16th.

One of our producers, Mark Stolaroff, said, “Hey, it’s a great fest. Gotta apply to submit to Omaha.”  So we did. This is my first time here, and it’s awesome. We’re having this best time.

What is the pickle sandwich store right there?

Pickleman’s.

Oh, my gosh. I had my first. I’ve had my first ever Pickleman sandwich yesterday.

Shout out to you, Pickleman’s! Pickleman’s. And gave me a free cookie because it was my first time there.

So go to Pickleman’s. This is my pitch for Pickleman’s. [https://www.picklemans.com ]

What was your sandwich?

I got a number five, the turkey with the bacon. Heavenly. Heavenly. So see, you gave me the free cookie. You’re getting free PR here. It is so good. I want to go back now.

…  So we premiered at the Heartland Film Festival in Indianapolis in October. We had a private screening in LA with Cancer Schmancer, which is Fran Drescher’s nonprofit organization. We’ve done a private, virtual screening with a cancer nonprofit.

What else do we have coming up? We have the Garden State Film Festival coming up, the Annapolis Film Festival coming up, the Phoenix Film Festival coming up, and a couple more coming up that I’m not allowed to announced yet.

But from there, our hope is to get distribution. You know, we’ve been talking to some distributors, but our goal would be to get the film out there by this Fall. That’s the goal. We want to do the festival circuit, but we also want people to see it already.

Is there a question you wish I would have asked?

Well, maybe talk about the misconceptions, like about men being affected and that’s important.

If you’re a BRCA gene mutation carrier it’s really important to know your health screenings and to know your health risks and know your appropriate screenings.

There are options out there to reduce your cancer risk.

It’s not just women affected. Men can carry and pass on a BRCA gene mutation to daughters and sons.

I inherited my mutation from my dad. The ramifications for men and women are different, meaning that women have a higher risk of breast cancer. But male BRCA1 and 2 gene mutation carriers do have a slightly elevated risk of male breast cancer. And that’s important for them to know. And there’s also an increased risk of pancreatic cancer, prostate cancer. These numbers are under 10%, but they’re an increased risk.

What you really are hearing about women so often is that breast and ovarian cancer, it’s a 60 to 85% risk of getting breast cancer in your lifetime if you’re a BRCA gene mutation carrier. If you’re a woman, for ovarian cancer risk, it’s anywhere from 20 to 50%. With BRCA1 carriers, it can be as high as 50% ovarian cancer risk in your lifetime. And there are no reliable screening methods for ovarian cancer.

And that’s why this information is important to know.

Because with ovarian cancer, it’s often found late when it’s in the later stage and later diagnoses. If you have upwards of a 50% chance of getting ovarian cancer, there are no screenings. This is why they’re recommending for BRCA1 carriers, NCCN, to get your ovaries out between the ages of 35 and 40.

Now, we could talk all day about surgical menopause. It’s not wonderful. These options to reduce your cancer risk for women are not great, but they are options and they can save your life. There are also other options [such as] Tamoxifen,

Thank you.

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

Omaha Film Festival Interview: Amy Byer Shainman- Executive Producer, “Love, Danielle”, Part One

OmahaNebraska.com Interview with Amy Byer Shainman- Executive Producer, “Love, Danielle”

Amy Byer Shainman- Executive Producer, “Love, Danielle” with painting in background

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 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 genetic mutations.

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 BRCA1 genes from your father.

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.

I have three out of four from my father that are working.

BRCA1 and BRCA2 genes are tumor suppressing genes. What that means is they protect you from getting cancer.

If you are born with a mutated BRCA gene, you are birn with an increased risk of 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.

How did you discover that you had the gene?

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,  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 BRCA and hereditary cancer.

The red flags –She was under 50 when she was diagnosed. She had two separate primary cancers, and she was of Ashkenazi Jewish descent.

Now, mutations can affect all ethnicities, but certain populations  have a higher risk. For example, Ashkenazi Jewish populations have 1 in 40 chance of carrying this mutation, which is a 10x higher risk than the general population which has a 1 in 200 to 400 chance. Bahamians  have a high rate of BRCA mutation. Also, French Canadians. There are certain populations that have a higher risk for carrying these mutations.

Once my sister 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?

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 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.

In my book, I discuss my grandmother. I ended up finding medical letters about her and 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 from those medical letters that it was metastatic 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.

I mean, it’s important if you have a family history, that’s important to 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?

The National Comprehensive Cancer Network® (NCCN®) has released a new resource aimed at helping individuals understand genetic testing and counseling for hereditary cancers. This patient-friendly guide provides essential information on identifying genetic mutations that increase cancer risk and details the latest recommendations from experts in the field of cancer genetics. http://thebrcaresponder.blogspot.com/2025/01/new-resource.html 

Bring up your concerns to primary care providers and OBGYNs.

However, they’re not always trained in medical genetics.

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  genetic counselors.

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.[https://thebrcaresponder.blogspot.com].

… 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.  However,  all genetic testing is not created equal.

You have to make sure it’s clinical genetic testing.

It’s your personal story, Devin’s personal story. It’s possibly thousands of people’s stories. The future stories of people yet untold will be better because of your important movie.  Your film is not just a movie. You’re going to change the the future stories of BRCA families with this knowledge.

All the medical information and the dialogue and the actions in the film were fact checked by 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. 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 decide what is truly important to the story when it is a scripted film. We touch upon important things, but you have to have an editing eye and leave out certain things that don’t further the key elements of the story in a feature length film time frame.

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

Visit back later for Part Two!