MS Sucks

I have recently been approved to be a Biogen Idec MS advocate. Biogen Idec is the company behind Avonex and Tysabri. I am speaking at a MS event mid-October. I think there will be over 100 people based on the turnout of similar events. Biogen Idec brings in a neurologist to talk about recent developments or certain therapies and they also serve dinner. I am the opening act. I have to put together a twenty minute speech about my MS and related experiences. As I think about all that I have to say, I know I can talk for twenty minutes. I just have to figure out how to organize my thoughts, the most important things to say and how to hold every ones attention. I have to be more appealing than the chocolate cake.

I decided to speak at an MS event hosted by Biogen Idec instead of my local MS chapter because I think I can reach more people. I will have to talk a little bit about my diagnosis and course of treatment but I want to focus on the importance of:
1. Choosing a good doctor
2. forming a support team
3. talking openly
4. listen and be open to new ideas
5. change your diet and exercise plan if necessary
6. be the boss of your health care
7. challenge your doctor & stay on top of your insurance company
8. research and educate yourself about MS and new developments

Here is how I am thinking about opening my speech.

“I want to open by saying something that we will agree on. MS SUCKS!
MS Sucks for those of us that have MS and for the people that love us. We are moms and dads, sisters and brothers. We are students and professionals. We have passions and hobbies. We are athletes and gardeners and travelers. We had our futures planned without MS.

It is my mission to make MS suck less for myself and my family and for you.”

So what do you think? Too harsh? I could do the typical, “Hi my name is Courtney and I was diagnosed with MS in July of 2006……..”

I would really appreciate your input and will post the full speech when I put it together.


11 responses to “MS Sucks

  1. I say give it to them straight from your heart. MS does suck so why not say it. I don’t think there is really one person I have met with MS that would sugar coat their speech. Can’t wait to hear it once it is all put together.

  2. I think admitting to the fact that MS does indeed fit the description of “All things sucky” would make you more appealing to listen to. Personally I tire of pharma reps telling me how wonderful everything is and only glancing over the things that I know they can’t relate to. Go for it.

  3. There are many people on Investor that would love to help you with your speech. Just go to the elan message board (ELN)

  4. all of the points you want to focus on have to do with taking charge of one’s own life and dealing with MS proactively, which i think is a great focus for your speech. so, while i think your opening is good, i think an opening that emphasizes TAKING CHARGE would be stronger and provide a better segue to the rest of your speech.

    i like starting with “MS sucks” but i would immediately go on to say something along the lines of: none of us wanted, expected, or deserved to get this crappy disease, but since we are stuck with it, the important question is “what are we going to do about it?” and then tell them that you are here to talk about what people can do to take control of their lives with MS.

  5. I like it a lot! ‘Specially as today I was really thinking to myself “MS sure does suck” Why sugar-coat it? It’s the truth, and I’m sure it will grab everybody’s attention. I like the outline of your speach, too. I wish I could attend and hear you deliver it. Good luck.

  6. Wow! I mean, just … wow!

  7. Hi Courtney,

    I am so glad that your third infusion went well, and that you tolerated the infusion of Tysabri much better than numbers one and two. I had a feeling that if you were pre-treated with either Benadryl or Claritin and they slowed the infusion process down, this would help in your infusion reactions. I’m also thrilled that you tested negative for Tysabri antibodies… yaaaaay!

    Regarding your speech for Biogen, I have several suggestions for you, but I don’t want to take up too much of your blog space in posting them here. If you would e-mail me Courtney, I would be happy to give you my suggestions for the MS patients that you will be addressing in your speech.

    I have to go for a little bit, but please, drop me an e-mail so that we can discuss this okey-dokey artichokey? 😉

    Again I’m so happy for you dearheart, take care now.

    Lauren 🙂

  8. yes i think anyone with MS can relate to your opening and will listen to all you have to say after. this is wonderful that you will have a great opportunity to help others.

  9. You should say it as it is!! MS does suck!!


  10. Your approach is perfect! You will grab your audience attention quickly because now they are going to want to know from a person who is living with MS, why it sucks.

    Don’t forget to mention how unpredictable MS is.

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