Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Sunday, September 27, 2009












Hello everyone!

I had my 39th Tysabri infusion on Wednesday 9/30, but more important was the week before when I was invited by the Vice President - Corporate Relations of Élan Pharmaceuticals to speak at their Élan Employee Day on 9/25. My infusion went well with no problems, but let me get to my week prior to my infusion. The photos above are a few of my friends that got together for dinner up in San Francisco Thursday night-the night before I spoke at Élan : Ray, doodah, Me, Dexter, and Roy;
Me and my friend Roy; my friend doodah snatching a little smoocherooooni; the band that performed at Élan's Employees Day; Mr. Kelly Martin (the CEO Of Élan Pharmaceuticals) & me; Mary Stutts (she's the Vice President of Corporate Relations) & me; Dr. Ted Yednock (he's the brilliant scientist that discovered Tysabri & he is my hero!) & me; my friend Pam that I met up there in San Francisco who also has MS and just completed her 39th infusion, me, and an Élan employee that was all over the dance floor!


I had such an awesome time at dinner Thursday night with doodah, dexterstinks, Roymulus, and my caregiver Ray. I am not sure if the food or the company at our table was more sinfully wonderful!!! All three of my friends mentioned above were so generous, compassionate, and caring, it was all I could do to not burst out in tears (happy tears) at getting to see doodah again but especially to meet Roymulus for the first time (none of you could ever know how absolutely wonderful this man is), and to meet dexterstinks for the first time as well..., everyone was so funny & gracious, I'm surprised I didn't choke on my food laughing or have my mudslide fly out of my nostrils. I just hope they all had a good time and if they only had a minute decimal of the good time I had, I know they enjoyed themselves.

The trip up to San Francisco was rather tiring on me, but all of the arrangements made by Élan getting up there and the accommodations they provided me with were great. It's the trip back home Friday night that was a disaster (no shuttle was available to pick Ray and I up once we landed), even though I had the confirmation itinerary which was previously sent to me by Élan. After a two hour wait upon landing, Ray finally made arrangements with the shuttle, and we both made it home after a total five hour delay, through no fault of Élan or the airline, it was the shuttle service ( grrrrrr ). And to top it all off, the shuttle driver was waiting for a tip... I was so p.o.'d off at them, the only tip I gave them was not to swim in shark infested waters !

A brief synopsis of what transpired on Friday at Élan is below, and Friday, 9/25, was not only the Élan Employee Day, it was their 40th birthday celebration for the company, and it was a huge, and I mean HUGE production they put on for not only their employees, but their guests as well! A live band (which was phenomenal), professional dancers in the band (which were also phenomenal), a film of Élan's history which was shown on two large screens, and food-food-food-and more food!

Some of the speakers were Kelly Martin, Shane Cooke, Carlos Paya, Mary Stutts, one of the representatives from J&J, so many people, I can't remember them all. Above are photos of Kelly Martin and I, Mary Stutts and I, my HERO TED YEDNOCK and I (he came over to talk to me after my speech and spent at least 45 minutes talking to me-and me talking to him-both of us trying to speak over a live band that was playing) so he told me that we could speak later...(he could not believe that was my very first speech, we talked briefly about PML, how that all came about, the continued research of what happened with the patients that developed PML, the immune system, my personal experience with MS, etc. etc.) and oh so many top executives & researchers & employees that came out to meet me personally and thank me for being there...,

but it was me thanking them for inviting me, and everything that they are doing for patients. They are some of the most gracious, dignified but humble, caring individuals that I've ever met in my entire life..., they completely blew me away! I could not remember everybody that came up to me, because I was so exhausted by the end of the day and I'm sure some of them thought I didn't want to speak with them, but that wasn't the case at all..., I just ran out of steam. So I hope that they understand if they are reading this message.

Mary Stutts told me that she will be providing me with a copy of the video they were making of the entire event, including all patient stories. I'm not sure when their professional videographer will make this available to them, but she definitely and most graciously told me that they would be happy to provide me with a copy of same. She also mentioned to me that they might possibly use portions of my patient speech on their "Patient Voices" website..., woo hoo!

So here is the brief synopsis of my speech (I was allotted five minutes): I introduced myself, thanked several people including Mary Stutts for inviting me to speak there, her assistant Julie (who was utterly amazing- Mary, she is worth her weight in gold), Mary's other assistant Myesha, Mr. Kelly Martin, Ted Yednock, and everyone who works at Élan; I told them how old I am, how long I'vehad MS, that I was the first person in both 2005 & 2006 through Kaiser Permanente in Southern California to receive Tysabri, the kinds of improvements I made/had in 2005 just two weeks after my very first infusion:

(my limp was gone, my right drop foot was gone, my slurred speech was gone, my optic neuritis was gone, I put away my walker & was only using my cane for balance, and on the day my second infusion was to take place, Tysabri was removed from the market and how devastated I was. I then mentioned to them that it was in June 2005 that I got hit hard with a severe relapse which left me in a wheelchair and they could see how disabling a severe relapse can be. I then mentioned so many thanks go out to David Kaplan for actually bringing together so many Élan investors to help mobilize and assist many of us patients getting to the FDA Tysabri hearings in March 2006, MSpatientsforchoice, and how everyone just came together to bring about this endeavor, including the videographer that was arranged to videotape my testimony and then the delivery process to get it out to be viewed by the FDA AC committee.

I then mentioned that I basically am all over the Internet, specifically the MS boards, providing accurate Tysabri information, answering e-mails from scared MS patients about PML, advising them not to be scared, not to believe all the lies that are posted by idiots on the different MS boards, to speak to their doctors, I tell them about my experiences with Tysabri, and not to be afraid if their immune systems are okay.

I closed by telling them that Tysabri has given me hope once again and I am no longer afraid of waking up wondering what MS has taken away during the night (you never know when you might lose your eyesight, you might lose the use of your hands, legs, right side or your left side, maybe one of these symptoms, maybe all of these symptoms at once). With Tysabri, my MS is now stable, I have not had a relapse in over three years, and no new lesions showing on my recent MRIs. I may never be able to walk again, but that is never going to stop me from having hope for a better quality of life which Tysabri has already given me.

After my speech, Kelly Martin came up to me and just started talking to me, asking me if I've ever given a lot of patient speeches before, and I told him no, that was my first one and I was so nervous I almost threw up (seriously-LOL). He looked shocked and said that was your very first speech? And I said yes. I wanted to talk to him more, but they whisked me away to help cut their 40th birthday cake, and when I was finally done, I was told that Mr. Martin had to catch a plane. Darn it!

It does not matter to me whether or not you like him or don't like him, all I can tell you is that he is a truly gracious & caring individual when it comes to how he feels about patients, and how his and the company's focus is on the patients. I cannot you how many Élan employees came up to me after my speech to not only meet me but how much they thanked me for everything I'm doing..., but again, it was me thanking them for everything that they're doing! Some of us exchanged e-mail addresses, some of us patients also exchanged e-mail addresses, etc.

Okay, I'm exhausted now, so I'll have to call it a day.

Hugs to all, and thank you everyone for your warm wishes, your thoughts and prayers.

All my very best to each and everyone of you, Lauren

PS: Oops, I forgot to mention that BAP was also discussed in a favorable light, and many researchers at Élan came up and told me that they are very excited about this medication and the implications that it will have on the Alzheimer's patient population..., a couple of of them also told me that they were working on a Parkinson's medication. Just remember that I am unable to go into great detail about our conversations because the live band was playing at the same time we were trying to talk and listen to each other, and that was very frustrating for all of us, but especially me because I can no longer talk very loud. I really, really, really wanted to visit more with Mr. Yednock, but it was almost impossible for either of us to understand what each of us were saying to each other (Argh!)




12 Comments:

  • At 5:34 PM, Anonymous Anonymous said…

    Lauren: How exciting for you and your group! Sounds like your speech was enthusiastically professional and very well received. Can't wait to see the video when it's available. Too bad there wasn't enough time and quiet places to talk with all the researchers and pharmeceutical people. Also, too bad about the transport delay on the way home....you deserve a long rest after that kind of a trip and effort. Maybe a double mudslide might help?
    My best to you,

    Deb

     
  • At 7:25 PM, Anonymous courtney said…

    Hi Lauren,

    I wish I had known you were in San Fransisco last weekend. So was I! Sounds (and looks) like you had a great time. I've included a link to your site from my new resources page. You were such an instrumental part of me starting Tysabri. Now, having just finished my 29th infusion, I appreciate you and your advocacy more than ever. Thanks for everything you do!

    Best,
    Courtney

     
  • At 1:11 PM, Blogger Lauren said…

    Oh gosh darn it Courtney, I too wish I had known you were in San Francisco that weekend--we could have had a wonderful time visiting, laughing, and sharing our Tysabri experiences!

    Thanks so much for your kind comments, you are such a sweetheart.

    I'm so glad your Tysabri infusions are going along uneventfully (that's always a good thing, right?)

    Take care now & enjoy your week!

    (((Hugs)))

    Lauren :)

     
  • At 1:15 PM, Blogger Lauren said…

    Hiya Deb,

    I'm all rested now, and because I'm having my 39th infusion tomorrow, I'm having a mudslide tonight, yeeehaaaw!

    Take care dearheart..., Lauren :)

     
  • At 3:07 PM, Anonymous Anonymous said…

    Lauren: Did you see this one? Interesting, I thought. Deb

    http://themspodcast.com/therapies/study-shows-lack-of-understanding-in-ms-medications/

     
  • At 2:41 PM, Anonymous Ann said…

    HI! I came across your blog while looking for information about tysabri. I have MS and I'm a pharmacy student doing a research project on tysabri. (killing 2 birds with one stone, so to speak) Do you have or know where I can find pictures or videos I can save of HOW tysabri works in the body? That would be awesome. THANKS!!

     
  • At 3:32 PM, Blogger Lauren said…

    Hi Ann,

    Funny you should ask that Ann..., I have a video on my UTube site that explains how Tysabri works. It can be found at:

    http://www.youtube.com/watch?v=9zLYxr2Tv7I

    Good luck dearheart, all my best.

    Lauren :)

     
  • At 9:14 PM, Anonymous Ann said…

    Thanks Lauren :)

    The video is great!! I need to steal parts of it if I can (giving credit where credit is due of course) do you know of where I might be able to get that same information that I can save to my hard drive?

    PS - I'm in So Cal too... :)

     
  • At 12:01 PM, Blogger Lauren said…

    Hi again Ann,

    I can't remember where I originally found this video, but on the following website, there is also the same video (in a shortened version I believe), that you can copy:

    http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/home/about-tysabri/how-tysabri-works.xml

    I don't believe you can copy "portions" of this video, only the video itself from that website.

    You can also do a "Google Search" of what it is you are looking for.

    Hope this helps, Lauren :)

     
  • At 12:28 PM, Anonymous Ann said…

    Thanks so much Lauren - hope I didn't drive you too nuts!

    I appreciate all your help ~ hopefully showing this to a classroom full of pharmacy students will be helpful for all MS patients :)

    Have a great day!

     
  • At 1:47 PM, Blogger Lauren said…

    You didn't drive me nuts at all Ann! I think you can copy the video from my UTube website, I don't mind at all.

    Waving to my fellow Southern California - enjoy your week!

    Lauren :D

     
  • At 3:35 PM, Blogger Stuart said…

    You are looking good Lauren... Keep up the great work.

    Best Regards,
    Stuart

     

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