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  • Who’s Who Wednesday- Romy Braunstein

    Posted by dawn-debois on September 23, 2020 at 8:00 am

    For our first Who’s Who Wednesday I’d like to introduce my dear LEMS Sister, @romylb!


    Romy Braunstein- Rare disease advocate who has found it her mission to educate about invisible symptoms that often go undiagnosed.

    Romy Braunstein and I first met in April of 2018 at a LEMS patient meetup that was held at the  Myasthenia Gravis Foundation of America’s national meeting in Kansas City, Missouri.  I had never met another LEMS patient until then; and had the privilege of spending 4 days with the greatest group of people- we all became instant friends and are to this day.


    Lisa, Dawn, Romy and Betty Ann on the very first day Romy and Dawn met in 2018 at a LEMS patient meet up in Kansas City, MO.

    When Lisa told me about Romy, prior to meeting her myself, she said “She was in Revenge of the Nerds.”  Really??  Yes, really.  Romy was an extra who will never be forgotten as the very tall Omegu Mu!

    As one of the very first few LEMS patients diagnosed in the early 90’s, Romy didn’t take “there’s no treatment” for an answer and happily joined as the first patient in the FIRDAPSE trial. She also let any other patient she found online know about the trial and many enrolled.

    An advocate from the beginning, Romy tells about how when she worked as a  national sales rep for iHeart radio, she had to be propped up at the American Idol shows by her husband to man her booth. She’s met all of the Idols, all of them. Yes, I’m very envious. She’s met dozens of musical artists and producers throughout her career in radio.


    Romy and Tony Bennet at the Billboard Music Awards in Vegas in 2006.

    Despite the trials of having an undiagnosed and untreated for many years rare disease- LEMS- there is always laughter whenever Romy is around. Due to all of the years that Romy struggled before finding treatment that helps to manage her LEMS, Romy has made it her mission to be a voice for all who are still struggling and seeking diagnosis and treatment of a rare disease. She has a Facebook following on her Romy on Rare Disease Symptoms Awareness page.

    She’s even enlisted her old friend from Nerds to share her message!

    https://www.cameo.com/v/BoKnQlyms

    Romy and her husband, Robert, have been married for 30 years now. Their daughters are amazingly successful and driven. Helen is a 27 and a nurse at Penn, and Zoe is 22 and a law school student. They are a very close family that I’ve been privileged to spent lots of time with over the last 2 years. One of the toughest parts of COVID for me is not having any immediate plans for spending time together.


    Romy and her family: daughter Helen, her husband Robert and youngest daughter, Zoe.

    However, when things get a bit too stressful for me, I just send Romy some snaps on Snapchat or think of our crazy times together laughing at patient events and I’m immediately brought out of whatever funk I’m in.  Get to know Romy and I promise, she will do the same for you!


    SnapChat filters always find their way into Dawn and Romy pics!

    Thank you @romylb for always finding a way to make others laugh, and for teaching all rare disease patients to be their own best advocates!!

    lisamark99 replied 3 years, 6 months ago 3 Members · 3 Replies
  • 3 Replies
  • romy-braunstein

    Member
    September 29, 2020 at 9:12 pm

    Love it!!  Thanks tons!!

     

  • dawn-debois

    Member
    September 30, 2020 at 3:18 pm

    @romylb,

    Everyone needs to know what an amazing advocate, friend, Mama, daughter, wife, and kick a** LEMS patient you are….The list goes on.  I can’t wait till things start to open up because I miss you bunches. We are long overdo for laughing our way through the halls of whatever convention or meeting we are at!

    When you have a link to one of your amazing videos, please share here, too!

  • lisamark99

    Member
    September 30, 2020 at 5:03 pm

    Go Romy!!!  Romy always says something that sticks with me, walking is a privilege!

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