Meet Brooke Emmerich of Fairfax District

Today we’d like to introduce you to Brooke Emmerich.

Hi Brooke, so excited to have you on the platform. So before we get into questions about your work-life, maybe you can bring our readers up to speed on your story and how you got to where you are today?
I’m a bicoastal Actress, Producer, Writer and ALS/ FTD Research Advocate! I grew up in LA and was lucky enough to experience a lot of travel, art and culture in my youth. My parents were both published writers and my Mom in particular was a life-long musical theater lover- she introduced me to her favorite shows like les Miserables and Cabaret when I was very young, and I fell in love. I studied Acting at Illinois Wesleyan University and spent a semester abroad in London. Since college, I have performed regionally in California, the Midwest, Maine, Florida and New York. I am currently expanding my work in the entertainment field into tv/film and voiceover. I’m obsessed with music, film, theater, animation, art, photography and books. I’d say people know me as an “old soul”- a romantic, and lover of the past, nostalgic, melancholy- I collect antiques and vintage clothing, keep a note of poetry that I write on the MTA, and am planning an Anne of Green Gables-themed trip to Prince Edward island for my Birthday!

We all face challenges, but looking back would you describe it as a relatively smooth road?
I will always think of my Mom, Judy, as my person. She was my champion, my confidante, the person I would pick out of a sea of everyone I’ve ever known. She was a brilliant, adorable, Annie-Hall-like creative and firecracker- a prominent journalist, writer, cartoonist and crafter.

My parents divorced when I was 12 and shortly after that, my Mom became ill with a type of dementia related to ALS. FTD, or frontotemporal degeneration, is often misdiagnosed, and my Mom was diagnosed with depression, PTSD and schizophrenia before motor symptoms of ALS crept in. Eventually, she lost the ability to walk, move her hands, and had difficulty swallowing and breathing. Even in the latest stages of disease, she knew me and, though she couldn’t catch a breath to speak, she would mouth “I love you.” She loved me. She loved life. She wanted to live.

In the last few years of her life, when her sister was also diagnosed with ALS, I discovered these diseases are genetic in my family. The most common genetic cause of ALS and FTD, a genetic mutation called C9orf72, has a 50% chance of being part of my genetic makeup. I have not yet pursued testing. Along with myself, I have over 9 family members at risk.

When I first found out about my risk, I didn’t think I could ever be happy again. Still, somehow, even though I was frozen with despair, the only thing I could get myself to do was to learn everything I could about these diseases- how a repeat expansion on a single DNA sequence could lead to horrifying outcomes- and ways that it may be treated.

It’s funny… I’ve had a lifelong interest in medicine and the human body and at one point considered becoming a doctor, though I decided against it and became an actress instead (haha.) I find myself astonished at the surprises life throws our way- to be fighting to help cure disease and myself in a position where I may need a delicate, high risk procedure to save my life, like CRISPR- genetic editing. That is- if we can reach that goal in time for me and the many friends at risk I’ve made. I do not believe ALS and FTD are incurable diseases- drugs have already been approved to dramatically slow and in many cases stop progression in different genetic forms of ALS. I feel that everything I do in the neurodegenerative disease space is making headway to bring lifesaving treatments closer to patients- not just for ALS and FTD but Alzheimer’s, Hungtingtons- the closer we get to treating one the further headway we make for all of them. I could not imagine living a life that was not in service of furthering research.

Appreciate you sharing that. What else should we know about what you do?
I’m known for wearing many hats! I’ve got at least 10 projects going on at all times- right now I’m working on my voiceover demo, learning guitar, getting back into scrapbooking and my online vintage store! As a performer, I’ve done everything from teaching theater and costume design to princess parties. In New York city I own a small production company where I produce cabarets and readings. Musical theatre is an oversaturated industry and there are still many deep-rooted issues with the business. It’s been exciting to take the reins in my own hands and create opportunities for myself and like-minded artists! My most recent production was a cabaret at The Green Room 42 featuring songs from musicals based on classic literature. The show ended up being attended by Paul Gordon himself! Dream come true.

I rediscovered my love for writing a little over a year ago. I write a blog called Both Things Are True about grief, being at risk for C9orf72 disease, and how beautiful, horrifying, confusing and glorious it is to be alive! Writing has given me much solace, inspiration and has kept me hopeful in the darkness. I write to raise awareness of these diseases and keep my Mom’s memory alive, and to create connection and hope.

In my advocacy work, I’m engaged in constant conversations and meetings about how to expedite clinical research and make the world a better place for those living with ALS and FTD and their caregivers. I attend the yearly summit of my favorite advocacy group for people at-risk, End The Legacy. I participated in the 2025 NEALS Clinical Research training Program in Florida last month, and I was also selected to be a part of the Patient Fellows Program through the International Alliance of ALS/ MND Associations in December. I’m also involved in four research studies- I get yearly strength and breathing tests, MRIs, EMGs and spinal taps so that my data can help researchers find more ways to treat ALS and FTD.

Because of how I watched my family members pass away, and keeping my own risk in mind, I wake up with a fire in me every morning to make the most of each day- to explore, travel, share, curate, savor, hold the ones I love closer, create voraciously, sing loudly and work hard to make my dreams come true.

Any big plans?
I hope to continue my work as a multi-faceted artist with the larger goal of ALS and FTD awareness in mind. I believe that I don’t have to just choose one path to be my “thing” in life- I believe in abundance. And I find that the worlds of science, medicine and art fit hand in hand. Osamu Tezuka (known for “creating” what we know of as anime/ manga) went to medical school before he became an iconic mangaka, and later wrote “Black Jack” about his experiences in the medical field. I will find a way to incorporate both art and clinical research in my life. And I thoroughly believe being involved in both of these passions will make me an even stronger fighter in the ALS world. Art is storytelling, and stories can change the world and the future. There are many who believe these genetic diseases are better off being swept under the rug, a secret, a family curse. But I am not that way. I want to be loud about my Mom’s story and my experience. That is one of the ways in which I can best honor her.

I believe I have a very unique perspective in the ALS world, as someone with experience as a caregiver, being at risk myself, and who has participated in ALS advocacy from different angles. Along with my ongoing blog, I am arranging a big fundraiser for my favorite organization, Target ALS. My Dad will be moving to France next year, where half of my family lives. I would love to use the opportunity of a residence in France to help expand advocacy to the French community, where C9orf72 is still the most common cause of ALS. Which reminds me to work on my French- I’d like to do more than order a pain au chocolat.

Along with these goals, I have many ideas of what I’d like to do next year! Travel to Japan, produce a full length play, do some more short films, re-learn how to sew, read more, engage in climate action. I always want to keep learning, working on myself and connecting with people!

Contact Info:

• Website: https://brookeemmerich.net
• Instagram: @brookemmerich
• Other: @brookelynn301 (TikTok)