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Lisa Bonahoom

Home Members Lisa Bonahoom
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@bonolisa

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  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic Looking for PALS for ALS News Today News Story in the forum Research Topics 7 months, 2 weeks ago

    Happy to talk with you Hawken, if I can be of help. Lisa

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic Do you consider yourself a “hero” for living with ALS? How about a “survivor?” in the forum Living With ALS 8 months, 1 week ago

    I prefer Warrior, because I never stop fighting!

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic Dressing up for hospitals or appointments in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 8 months, 3 weeks ago

    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.

  • Profile picture of Erin minton

    Erin minton and Profile picture of Lisa BonahoomLisa Bonahoom are now friends 10 months, 3 weeks ago

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic Passing away and respiratory in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 10 months, 3 weeks ago

    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

  • Profile picture of Shannon Halstead

    Shannon Halstead and Profile picture of Lisa BonahoomLisa Bonahoom are now friends 10 months, 3 weeks ago

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 11 months, 2 weeks ago

    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

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 11 months, 2 weeks ago

      Congratulations Lisa! You certainly are having a lot of fun events right now (starring in a movie…daughter’s marriage…and maybe even more!) 🙂

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic Genetics, How Does this Knowledge Change Things for You? in the forum Research Topics 1 year ago

    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!!

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic I wrote a song for ALS Awareness Month in the forum ALS Awareness Month 1 year ago

    Thank you for this music!  You did nail it!

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic Genetics, How Does this Knowledge Change Things for You? in the forum Research Topics 1 year ago

    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]

    • Profile picture of Amanda
      Amanda replied 1 year ago

      Hi Lisa,

      Thank you for participating in the clinical trial. Without pALS participating they would not be able to make progress. You are indeed a Hero in my book!! What trial/study are you involved in? What do you think so far? How are you feeling?

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic Did You Have to Change Careers, or Even Retire, After Being Diagnosed with ALS in the forum Living With ALS 1 year ago

    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]

  • Profile picture of Susan

    Susan and Profile picture of Lisa BonahoomLisa Bonahoom are now friends 1 year, 1 month ago

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 1 month ago

    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]

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 1 month ago

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

    lisa

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 1 month ago

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

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 1 month ago

    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

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 2 months ago

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

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 2 months ago

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

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 3 months ago

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

  • Profile picture of Lisa Bonahoom

    Lisa Bonahoom replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 3 months ago

    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

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 3 months ago

      Fantastic! Thanks for letting us know – – fingers are crossed you get the part. I’m so glad you are continuing to use your skills!

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