Lisa Bonahoom

I wear an irreverent ALS T-shirt. The clinic and other patients appreciate and love it. If I can bring a smile to the faces of that group my job is done. No one is offended.

Sadly, I think most of us pass due to respiratory issues. I wish you only the best as you care for your husband. I hope you have support. Lisa

I am happy to share that my daughter is getting married in July. It’s been a joy preparing for the wedding. I will share pictures when I can!  Lisa

I was in the Biogen ASO trial for C9 familial ALS. I did really well on it but was an anomaly. Not enough participants improved. They canceled the trial almost two months ago.
I am hoping for Centaur now.  Hanging in there!!

Thank you for this music!  You did nail it!

My family has the C9orf72 mutation. I had already been diagnosed with ALS when I was asked to test for the gene. The  knowledge saved my sister from unnecessary carpal tunnel surgery. I told her to have her doctor refer her to a neurologist.  They found ALS. The testing made me eligible for an important clinical trial. I have three more siblings w…[Read more]

I was teaching full time, choreographing and directing shows, dancing and singing professionally, acting, designing for the opera. ALS first affected my breath, so I had to retire from everything but designing for West Bay Opera. I danced in the studio for almost 5 years after diagnosis. My ALS has progressed to my limbs, so I had to retire from…[Read more]

It’s a wrap!   We filmed yesterday and it was an amazing experience. The director and film crew were so thoughtful. It was filmed in my sister’s house in San Francisco. We worked around the sounds of the city!  It was strange to be in my sister’s wheelchair. It fit me .  The makeup artist did her best to make me look sick, as my character was much…[Read more]

I will be using my late sister Carol’s wheelchair.  It will be a tribute to her. ALS took her last year.

lisa

The shoot was moved up one day.  We are now shooting on Tuesday!  I will share the experience when I can!  Lisa

I am looking forward to filming in two weeks!  I am sending my son to pick up my late sister’s wheelchairs to use for the shoot. We will be filming in San Francisco     My sister’s home and table was chosen by the production company. Thank goodness for family!  Lisa

The film is still in production and I don’t know it’s release date. I will share when I do. Lisa

Hi friends!  Just an update. I am filming April 20th. So excited to represent!  I will keep you in the loop. Lisa

Dagmar and friends, I got the part!  So excited!!  I did the callback today.
Lisa

Hi Dagmar!  I auditioned yesterday and it was a marvelous experience!  I was an actress before ALS and I thought it was gone forever. I so enjoyed working with them. I will let you know  what comes of it. Thank you for the connection. Lisa

Thank you Dagmar. We have so much in common. I appreciate your writing!  I started slurring words 6 years ago, and have tried everything to keep my voice.   I have been pretty successful so far. I do know it’s getting harder but I am happy to still be here!  Lisa

Hi Lonny!  It is still going.  I am in it.  They are still trying to find the optimal dosage.   It is very tightly controlled.   Do you have C9?  Lisa