Saturday, August 10, 2013

It Finally Happened #gilenya #multiplesclerosis

Yes, I know I said the party was over, and truth be told there's nothing left here on this blog but the confetti on the floor and a bunch of empty solo cups to pick up.

But for the entire duration of this blog, which has been about my experience in the TRANSFORMS clinical trial for the MS drug Gilenya (fingolimod, FTY720), I never had a relapse.

I guess this blog was my lucky rabbit's foot. I should have kept it going. The minute I called it quits (and yes, I realize it's coincidental, but the irony amuses me) I have a bona fide relapse.

For the past week or two I have been suffering crushing fatigue. No all-nighter in my 20's could ever have topped this. A feeling like Horton is sitting square on the center of my chest.

Then, when I'm able to shove him off my chest and become vertical, I realize karma thinks I'd look faaaaaabbulous in a lead suit.

Alanis Morissette left a verse out... "like gaining weight, when your legs don't want to move". I'm serious. I was stuck in bed part of that time taking comfort in snacks because they made me feel better. Thank God the worst of it was over after only a couple weeks or they'd be cutting a hole in the wall to get me out of this joint.

I called my neuro when I finally decided it wasn't just hypochondria getting the better of me (is there an opposite of hypochondria because I think I have that now. Whoops, no, there I go begin a hypochondriac so I guess I'm good).

I went to have a checkup at the clinical trial center and they did the EDSS on me. I had increased weakness in arms and legs, numbness in parts of my forearms and calves, and for the first time EVER I couldn't complete the 500 meter walk.

They always made me do 24 laps of the study center hallway which measures out to be a total distance of 500 meters. I have always completed it (one time in just under 10 minutes), and always unaided.

Yesterday I asked for my cane after 2 laps and had to cry "UNCLE!" after 18 total laps. The study coordinator said "wow! something really is going on, isn't it!"


So I will re-end this here now that there is an ending and "Girl Has Relapse".

I'm not gone, however. My new obsession, besides writing for, is my site,, where I'm hoping to educated people who are curious about clinical trials for MS what it's like from a patient point of view.

Also, stay tuned for an update on where I'll be blogging just any old stuff. I need a place to vent and this blog is too confining. There's more to me than my MS, after all. :)

Peace out.

Monday, July 29, 2013

The After Party #partnersinresearch #clinicaltrials #multiplesclerosis

My story here really ended a long time ago when I exited the TRANSFORMS trial on January 20, 2011. The show was over, but I've just been hanging around, excited to connect with so many people who have found me here on my blog and followed along.

This blog, for those of you who are just tuning in, has made a spectacle of itself as it was discovered by big pharma (thanks, Craig Lipset from Pfizer!) and a surreal conversation began. From that one encounter, a bridge was built between the real live trial patient (as opposed to anonymous Donor of Data) and the people behind the clipboards. Here's a fun fact: THEY'RE real people, too! Passionate and dedicated to their life's work, individually they are not nearly as evil as most of us perceive.

I attended the Disruptive Innovations conference and was an oddity to be examined all over again, as they puzzled over just how an industry so regulated might speak around the gag in their mouth and have a real interaction with those of us lab rats behind computers, engaging in social media. It's become a topic very near and dear to me.

Because of this conversation I have been propelled by the force of destiny into the role of patient advocate, and have had the honor of attending several conferences to represent the clinical trial patient and speak to the unmet needs of the patient side of research. I am not unwilling to assume this role, but I know what that girl at the Springsteen concert must have felt like when she was pulled on stage to dance with the band.

Big Pharma pulled me onto their stage and I'm trying to make my dance matter. Whether or not it was ever my intention, at the start of this blog, to become a patient activist seems not to matter any more. What's done is done and I feel the weight of responsibility on my shoulders. I want to represent for patients everywhere and give a voice to those who feel they have no voice.

I was once terrified to enter a clinical trial, but equally terrified of the suffering my MS was doling out. I started this blog when I was a trial patient hoping for a modicum of relief. The incredible benefit I got from that journey–having not had a relapse YET since taking the very first pill on Aug. 20, 2007–has bought me time to do the bigger things I believe I was meant to undertake.

First with the blog, then with Novartis' "Guide Network" of patient speakers for their marketing program, and now as a patient advocate, I go through doors when they open for me. So far, I haven't been disappointed yet.

So, I think it's time to move on. I know I announced blogging my extension trial but wouldn't you really rather go watch paint dry? I mean, it's more exciting, as it turns out. Nothing to see here, people.

Also, considering the name I have chosen for this blog and how closely tied to the medication most of the content is, I have outgrown the desire to post here. It will stand as a testament to clinical trials and the difference it made in my life, but since I have departed from being a part of the advertising campaign (the Go Program) for Novartis, it's only fitting that this blog be put to bed as well.

What started out as a hypochondriac keeping a journal of her clinical trial turned into a platform for so much more.

I'll still be blogging, but stick this one with a fork - it's done. To limit myself to be forever seen as merely Novartis' biggest cheerleader is too confining a container. I'm thinking outside the medication box now. Moving on to bigger and better things.

The day I got my nails done to match my Gilenya box. Hard core cheerleader. :)

Please join me, together with my friend Anne, who was also a clinical trial participant and Gilenya Guide, as we embark on a new call to action... our brand new website....

...where the conversation about MS, clinical trials, and how you can become a patient activist continues.

Partners In Research is intended to be a place where those who are interested can find out all they need to know about clinical trials. We will be expanding the content to include informational videos on the topic of research and adding blog posts from a patient perspective to help MSers see what a study is like from the inside.

We have just launched our page as well at:

I'll miss you, so please come visit over at Partners in Research! :)

Thanks for playing along!

Thursday, July 25, 2013

#drugprices : The High Cost of Quality of Life and How You Can Effect Change #socialmedia #activism

If you suffer from multiple sclerosis (MS), unless you have lived in a cave since 1993 when Betaseron, the first FDA approved disease modifying drug (DMD) came on the market, you are well aware that the cost of these drugs is astronomical. It seems morally wrong to put a outrageous price tag on a substance–capable of improving quality of life for those who suffer from this disease–only because people are desperate to get it.

Drug companies, when asked to defend their pricing strategies, quickly point out that the cost of research and development (R&D) is exorbitant, and only a small percentage of drugs ever win FDA approval after decades-long trials. If a drug wins that distinction it must pay for not only its own R&D costs, but for those that failed as well.

But there's much more that factors into how these drugs are priced.

I had the honor of speaking with one of the country's foremost experts on the topic of drug pricing, Dr. Kenneth Kaitin, a professor at Tufts University School of Medicine in Cambridge, Mass. We spoke for nearly thirty minutes on the topic of drug prices, how they are achieved, and the emerging power of social media to effect change.

He spoke to me about value, competition, patent life, and more. But he also spoke at great length about how patient groups, physician groups, and individuals are increasingly effecting change, enabled by the power of social media.

The interview was part of the research I did for the two part series of articles I wrote for

Part 1: Should Multiple Sclerosis Drugs Cost $62,000 per Year?
Part 2: Voices For Change: How You Can Impact MS Drug Pricing

In short, the pharmaceutical industry is one that operates like any other. They depend on their cash cows–in this case the MS drugs–to be the stable, revenue-producing portion of their portfolio that allows them to invest in riskier, cutting-edge research that often yields astounding breakthroughs in medicine. Like it or not, it's the system we have.

To be certain, all drug companies now offer generous patient assistance programs, so the majority of those who want them have access to the DMDs.

If you need to be on a DMD but think they are cost prohibitive, be sure to ask your neurologist about the programs available to assist in covering the cost.

After writing the series I felt uplifted, empowered, and motivated to use my online presence to try and inspire others. There are so many people suffering from MS out there who are sitting at home feeling powerless, frustrated and desperate about their situation. They feel hopeless to change the course of their disease, or they can't afford health care to try.

In this age of social media, however, activism is only a keyboard away. If you want to make a difference, start by joining the National Multiple Sclerosis Society, encourage those at a local support group to do the same. Get involved in speaking out. Blog your hopes and dreams for the future of healthcare, send your congressperson or senator an email about your situation and your desire for affordable medicines and healthcare. Take a stance and use your voice.

Every little bit helps. I'm going to use my voice to educate others on personal empowerment and how to effect change.

Now go do something positive and never forget: One person CAN make a difference.

Monday, June 24, 2013

Are You Up For The Challenge? #ctdesign @Lilly_COI Launches Patient-Centric ChallengePost

Before the term "Patient-Centric" was coined

Let me take you back. The year was 2007. I was at my wit's end, ready to pull the plug and give up. I was suffering one relentless MS relapse after another and seeking relief by any means possible. I read about the TRANSFORMS trial (Gilenya, Novatis AG) in the back of an MS Focus magazine. I decided I was desperate enough to get on the hamster wheel in the proverbial lab rat's cage.

But it was 2007. My cell phone wasn't smart, and the research study as it appeared on was not in the least inviting for a patient who was both terrified and out of hope.

But I had no alternative to finding out what being a patient would mean. There weren't even any blogs out there describing it at the time. I got my Informed Consent document and it looked like exactly what it is: a legal document that states I agree, after reading every horrible thing known or suspected about what I may or may not ingest or have performed on me, to willfully partake in the study knowing that I might be the reason they discover some terrible side effect through what is known as an Adverse Event.

Between the study description on, which looked like a page ripped from a college chemistry textbook, and the informed consent, which appeared for all the world to look like my Last Will & Testament, I was not left feeling all warm and fuzzy about the idea of joining.

To someone born a hypochondriac, with the same genetic makeup of her mother who is a world class worrier, all of this was rather foreboding to say the least. But that was nearly six years ago.

When I look back now, joining that trial was the single most courageous thing I have ever done. It was also the most life-changing. I was one of the lucky ones who was randomized into the arm of the study that got the, now approved, .5mg dose of Fingolimod from the very first day. My last documented relapse was in April 2007.

The fact that I have been relapse-free this long has allowed me to concentrate on other things in my life. Like advocating for future clinical trial patients, which is why I am excited to share this bit of news with you....

Making Clinical Trials Less "Clinical"

Eli Lilly's project, Clinical Open Innovation, is all about transparency and sharing information in the world of research, with the end goal being a cumulative effort at moving healthcare forward to benefit everyone. To quote directly from their "About" page:

Eli Lilly Clinical Open Innovation is founded on the belief that drug development processes must improve, and that open innovation methods can be used to make clinical development better.  We’re a small group of Lilly employees coming from diverse educational and professional backgrounds in disciplines like pharmacy, philosophy, IT, English, sales and management.  We’re interested in working with you to make a difference.

As it turns out, they aren't all hype. They have recently taken the subject of making clinical trials more "patient-centric" by the horns and have launched a contest to actually DO something about it.

On June 14th they posted the contest on their own blog at Lilly Clinical Open Innovation. This contest is open to all, with huge cash prizes.

It's a brilliant idea to gather all the great minds of designers, patients, healthcare professionals–anyone who wants to enter–and let them loose on the task of making clinical trial information found on more user friendly for the person seeking to become a clinical trial patient. This data, as well as the Informed Consent, are getting a What Not To Wear makeover.

The contest takes place on ChallengePost and you can get all the details there.

From Lilly COI's blog post:

We’re inviting all patients, healthcare providers, web developers, designers and others to help redesign the clinical trial protocol and informed consent document with the patient’s needs in mind through our Clinical Trial Visualization Redesign Challenge.

We’ll provide a sample clinical trial protocol, its informed consent document and associated record reference. Your mission, should you choose to accept it, is to transform those documents into resources for patients that improve the:

  • Visual appeal
  • User-friendliness
  • Potential for web and mobile applications
  • Clinical trial experience for patients.

I have been invited to be on the panel of judges selecting the lucky winners. I bring to the panel the unique perspective of having "been there, done that" with my own personal clinical trial experience. I am honored to have been considered for this role and really excited to get to see all the entries first hand.

So spread the word! This is a project that will have far reaching implications for years to come as all of the entries, according to the rules, will become open source and fall under the Creative Commons Attribution 3.0 Unported License. This means there is no price tag on genius. Share and share alike for the common goal of making research take a huge leap forward in the name of progress.

None of what is created will be thrown away or lost in the shadows of the winning entry's spotlight, for everything created for this challenge post has the potential to be utilized in the future, bringing  information to a new breed of clinical research partners (i.e. the patients) in a way that is meaningful, relevant and easy to understand.

Not only that, but doing so using a  digital, portable format patients are becoming increasingly dependent on in all other areas of their lives. It makes sense that research partners be engaged in a way that is both familiar and convenient for them. This can only have a positive impact on the patient retention rate and help with their study compliance.

Putting the Patient in Patient-Centric

I am excited to think that there might soon be a time when patients who are sick and tired of being sick and tired can consider research as not just the "when all else fails and I'm ready to die or join a trial" option, but as a viable treatment option, opening new avenues to explore. They might have the opportunity to effectively battle whatever disease with a new treatment years before it becomes readily available to all.

One day maybe research will be viewed as a lottery of sorts. Yes, there are great risks, hence the need for the informed consent. But there is huge potential for personal reward as well as the knowledge that by doing your part in joining a trial, you are helping to advance science for all. I feel like I won the lottery when I joined the TRANSFORMS trial and was literally given back my Quality of Life.

And when you get right down to it, isn't that what research is all about? The never ending quest to strive to improve the Quality of Life for all mankind? No matter how you slice it, that's the goal.

Making the process of finding and joining those trials more inviting and easier to understand can only be a good thing.  The audience this contest is intended to reach is none other than the very brave souls needed for any research to happen in the first place. You can't have patient-centric trials without patients.

Cheers to Eli Lilly for sponsoring this event and making "patient-centric" be something more than a catch phrase.

Good luck to all who enter, and I thank you on behalf of all future clinical trial patients who will one day benefit from your creativity. I hope it's not lost on any of the contestants that you are part of something much greater than this contest.

So, with that said....

Let the designing commence!

Tuesday, May 28, 2013

#livingwithMS - World MS Day 2013 - Getting Their Tweet On

I recall when I was first diagnosed with MS. I spent several years with my back turned toward the truth. I avoided the local MS group as they seemed to be sad and depressing. Lacking hope. I was so fearful of my own uncertain future that part of me just refused to believe I even had MS.

It was easier to deny than accept. Facing the truth would mean accepting the fact that I have an incurable, unpredictable, potentially disabling disease.

But somewhere along my path, well after my entrance into the TRANSFORMS clinical trial, and even after starting this blog, I became comfortable with facing my disease head on.

I believe my experience with Novartis' Go Program and becoming a patient speaker did more for me that I gave back to them. I learned to accept that I do have MS, that it's not the end of the world, and that with my voice I can reach out and make a difference to others who have MS.

It wasn't until I overcame my fear of public speaking that I came out of my shell and embraced, albeit reluctantly, health activism. But with the single act of accepting my own MS, for better or worse, I have freed myself and realized a passion I didn't think possible.

When opportunity knocked, I went through the door. So that is how my own personal MS motto came about. "Just keep putting one foot in front of the other." Simple, but there's a lot to be said for a pragmatic approach.

When I am speaking or writing on the topic of MS or my experience as a clinical trial patient, I have a sense of purpose. You can go a lifetime without ever knowing that feeling, but I have been blessed.

Tomorrow is World MS Day 2013, when the whole world joins together to recognize–and spread awareness of–multiple sclerosis.

I have been given the opportunity to help raise awareness of MS yet again! has invited me to participate in a Tweet Chat on the topic of World MS Day 2013. The event will take place live on Twitter at 11 a.m. ET.

I'm inviting everyone to join in or at least follow along by using hashtag #livingwithMS. It should be an awesome event! I will have the honor of tweeting alongside, Samantha Schech, a Client Service Consultant with the Multiple Sclerosis Association of America (MSAA); Ayesha Ali, Campaigns Manager at MSIF; and Ceri Angood, Director of Programs at MSIF.

Won't you join us?

UPDATE: Today's article on just published. Read about the "nuts and bolts of what goes into the making of World MS Day, and find out what comes from all that awareness and fundraising:

Thursday, May 23, 2013

Subject #0008 Version 2.0

My part in the historic TRANSFORMS trial which helped bring the long-awaited, first ever, pill form of treatment for multiple sclerosis (MS) to market ended with my exit date of 1/20/2011. I remember being terrified to start that trial. It contrasted sharply to the day the extension ended and they had to physically toss me from their study center back into the cold, cruel, unsupervised world.

They did so with a vague promise of a future "Extended Study" as soon as everything is lined up. I would be the canary in the coal mine, offering advance notice to those newly started on the drug in case something were to go terribly wrong over the long term.

I kept my study coordinator's cell number on speed dial and would occasionally call to be the squeaky wheel in need of grease, pestering her about when that study might start.

More than two years passed and I gave up hope. Friends in my MS circle who had also taken part in the early trials for Gilenya were sharing news of starting the long-term study. I was as disappointed as that one kid in grade school who comes in on Monday to hear all the happy chatter about the birthday party they missed over the weekend. Nobody invited me.

Then one day I got an email from my old study coordinator asking if my mailing address had changed. She's the kind that likes to remember you with a card on your birthday or at Christmas so I figured it was something along those lines. Making one last feeble attempting at getting my squeaky wheel greased, I wrote back saying the address was the same and inquired if she heard anything about the long-term trial.

Much to my surprise, the email I got in reply, which contained no exclamation points but was brief and to the point merely stated "I'm sending you the IC to look over for the long term trial." The "IC" being the Informed Consent. She probably sent me the email because she knew a phone call would result in maniacal screeching on the other end of the line.

Although I read it cover to cover, there wasn't anything in there that could dissuade me from joining. I have been waiting 2 years, 4 months, and 3 days for this stack of papers to be in my grubby little hands, but who's counting?

So, here we go again! I had my entrance tests all done on May 17, 2013 when I officially began this long term study. I went armed with my camera and made sure everyone knew "I'm blogging this", but I think most of them just thought I was weird.

The shots I got–for your viewing pleasure

 There is a Quality of Life questionnaire this time, same as before. When I see these questions, like, "Do you feel you are a burden to others?" or, "Does you MS make you feel alone?", I feel so sad for anyone that has to answer yes in order to be truthful. What our MS robs from us is often more invisible and less obvious.

 One of the best perks about the study is being able to go back to the generic, utilitarian bottles. Who cares that they aren't pink and orange with a catchy logo? I love my pills no matter what
they look like on the outside–it's what's inside that counts! And these bottles are so much easier  to manage for those of us suffering from the disease. Who has time for "slide this out, flip this down, try to push a pill through industrial-grade aluminum without crushing it, and then TRY to get the whole thing all flipped, folded and slid back to normal"?

 They have an all new, state of the art, peg test now! Nothing but the best this time around! See this post for the jack-o-lantern bowl we used last time and you will no longer wonder why I scored better this time.

The story goes that the nurse who first used the pumpkin bowl to administer the test did so without authorization, however, for the sake of consistency throughout the remainder of the trial, we were forever punished with that slippery, contoured, deep sided pumpkin bowl. I do not miss it at all. And now everything seems to be a uniform (Gators?) shade of royal blue or light blue.

  I had forgotten that half of my bodily fluids would have to stay behind, sucked out of me via a sharp, pokey needle, the likes of which I thought I'd never have to face again. I had forgotten the First Rule of Clinical Trial Visits: fluff up your veins by drinking lots of water to make blood drawing easier.

 The very last picture I got was of their brand new MRI machine. This replaced the old monstrosity they had, requiring the removal of an entire wall to get the swap made.

The surprise MRI was the only scary part for me this time around. You see, I had no idea it was even scheduled for the 17th, so I did not prepare by adequately fretting about this for a week prior and–more importantly–getting a Rx from my doctor for some Xanax. I'm still  50% hypochondriac, it turns out, and I am more than 20% Drama Queen.

When the study coordinator emailed at 4:45pm on the 16th to ask if I planned to come up early so I could complete paperwork and other testing prior to my 11am MRI, I didn't even bother to hit "reply".

I whipped out my cell phone and hit speed dial for her number instead.

"What do you mean the MRI is tomorrow??"

"I wondered why you never replied to my email asking if you were okay with that time."

"So, is it the same machine as last time? Because that's a short machine and I could deal with the MRI in that thing. Then even if I had Xanax, which I don't think I do, it just ends up being recreational anyhow."

"No, they replaced the MRI machine with a brand new one last year. It's much bigger."

"Bigger around, or in length?" (because in this case length DOES matter! They have to put your head in the middle of the tube to get the images, and that's not so bad in a 4 foot tube; less fun in an 8 footer.)

"Well, I don't know really. I know it's big."

So I spent that night and the next day tearing the house apart looking for a bottle containing exactly half of one Xanax. The other half of the pill was the one I took at my last MRI upon exiting the TRANSFORMS trial on January 20, 2011.

I finally found the pill the next morning, and even though I did take it, I think it just had a placebo effect. It was old and there was only half a pill. At any rate, I was  able to lay in that tube long enough for them to get pictures of my brain without freaking out and squeezing the emergency bulb, shouting "GET ME OUT OF HERE!"

Oh, you think that's funny? Heh. I've done it before.

So this is the second time around and I'm older and wiser now. Well, older anyhow.

This is Subject #0008 all over again, but I know the drill.

You're looking at version 2.0.

Wednesday, May 22, 2013

Summertime - Too Hot To Handle

I'm talking about heat sensitivity and how it affects MS, not me in a bikini–I'm about 30 years past that expiration date.

Read my latest article on the subject over at To get my own personal view on the matter, keep reading here first...

It was early on in my MS career (because that's how I think of it now, due to the opportunities which have come my way since diagnosis) that I had my battle with summer.

Summer won. That was the year the family drove from Florida to Georgia to see relatives who lived in the middle of Death Valley. Yeah, I know my geography is all wrong, but you could never have convinced me of that.

We were outside in the middle of July with not a single tree in sight. Sitting by a pool and broiling in sunshine. The mercury was pegging 100 degrees. Not knowing there would be swimming involved, I wasn't dressed for the occasion. I was wearing jeans and a T-shirt and sitting at the little round glass table with everyone else. I don't even recall an umbrella. I just remember the unbearable heat.

It grew hotter and hotter, but I never broke a sweat. That reminds me of the back-handed compliment/joke my dad used to tell, "You don't sweat much for a fat girl." Had I been able to sweat, I may have cooled off, but instead the heat just drove my core temperature through the roof.

I got up and staggered to the car, parked about twenty feet away and crawled inside to start up the A/C. Even with it blasting in my face, it seemed I couldn't cool down. By this time both legs were numb and weak. I was experiencing a fatigue like none before. I felt like I weighed a thousand pounds and it took everything I had to even lift my head off the back of the seat to turn and call out the window for someone to help.

That was my first–and most dramatic–encounter with heat sensitivity. After that weekend, when we returned to Florida, I ended up being admitted to the hospital for three days of IV Solumedrol to halt a new MS attack. My neuro at the time claimed it was only coincidental that I had such an intense reaction to the heat and then had a relapse. I've always wondered if maybe it wasn't the reason.

So this week's article about heat sensitivity is something I know most of us with MS are familiar with. If you have MS and don't have an issue with the heat, I'm assuming you are reading this at either the north or south pole, in which case cold is probably more of an issue.

If you are anywhere in between, be sure to read along for some great pointers and links to tools that could make summertime more bearable for you.

Because they don't have room for all the wonderful content I would love to share with you over at, I am going to continue blogging my "leftovers" so you can get a veritable  smorgasbord of useful info.

This Week's Leftovers (in no particular order)...
In an interview with Anne P., who is from Georgia and has had MS for 14 years now, we learn about her own experience with the heat. She also has quite a few good tips on how to deal with it.

"[I use a] cooling towel. I love the Frogg Toggs towels and neck wraps - they are amazing. Other than that I always have ice water at the ready and do my level best not to be farther than a comfortable walk to an air conditioned space - even if it's my car!," Anne advises, "Don't push it. Stop, rest and cool down a lot, even if you think you don't need to. It is better to be safe than sorry!"

When asked how heat sensitivity has made a difference in her life, Anne says "My days of pool parties and outdoor festivals are over. Really, what I miss the absolute most is being able to volunteer at booths for a local charity that I love."

Thanks, Anne!

Corrina Steiger, President of the North Florida Chapter of the NMSS provided a lot of valuable tips on dealing with the heat. She also mentioned that the NMSS has resources to help people in need of assistance obtaining cooling vests or paying high cooling bills. "For more information on how we can help, contact the Society in your area by calling 800-344-4867.”

Thanks, Corrina!

The interview I had with Dr. Scott Silliman was conducted over the phone and I did my best to type and listen and comprehend all at once, but I probably failed him miserably. He had so much great info to share.

"I usually see [heat sensitivity] most in people with spinal cord MS and in those with optic neuritis. I see it less in patients with a cerebral form of MS." Silliman said, "This is because there is less redundancy of nerve pathways in the spinal cord and also in the optic nerve, so there is less ability to compensate for nerves that aren’t working.”

It was an honor to have the pleasure of interviewing Dr. Silliman, as he is my own personal neurologist and was the lead investigator of the TRANSFORMS trial in which I participated.

Thanks, Dr. Silliman!

Kim Gillespie, creator of the TaTa Coolerz, has a different approach with how to combat the heat, for women anyway. She was away on a camping trip over Memorial Day Weekend (happy anniversary, Kim) when she got the idea for a cooling device that could be discreetly worn to cool you off without everyone aware you are suffering. The TaTa Coolerz are worn tucked inside a woman's bra, providing cool comfort to a sensitive area while bringing down your core temperature.

"They go right in the freezer, then you take them out and squish them up to get them malleable. Then, when you tuck them in your bra, they conform to your shape. We've had them last as long as two hours, fifteen minutes in the Florida sun."

"They are designed after high-end fashion push-up bras, and they are durable and reusable," said Gillespie. From her facebook page, "For the entire month of May TaTa Coolerz is honoring Mom. Please use code: Mom2013 to receive a 20% discount on your purchase."

Thanks Kim, for giving us another alternative to fighting this intolerable heat!

Summer doesn't have to be dreaded and unbearable. We can once again venture back out into nature to take part in fun activities like pool parties or picnics as long as we approach it with common sense and a few tools.

That's it for this week.

If I don't see you before, I'll see you next week. Until then, try to stay cool.

Wednesday, May 15, 2013

Deciphering the Smoke Signals: New Study Reveals Cigarette Smoking May Speed MS Progression

My second article is hot off the virtual press!

 In it I tackle smoking and recent study results regarding its effect on a person with multiple sclerosis. We've all known for a very long time that smoking is bad for us. I know first hand. I was a pack-a-day smoker for over 30 years. I only quit because I was terrified it would complicate things when I joined the TRANSFORMS trial back in 2007. The idea of "what if" plagued me and I figured I had the best shot at minimizing a negative outcome if I quit doing the one thing that was within my own control.

So on July 4th, 2007, I awoke for the first day in as long as I could remember and didn't start the day with the familiar comfort of a lung full of smoke. Instead, I pushed my way past the haze and the hurdles, the brain fog and the biting cravings, and made it through one day without succumbing to temptation.

It was no coincidence that I quit on the 4th of July. No, I wanted the country to celebrate my anniversary of quitting each year with a sky full of fireworks. No matter that they don't know me, nor would they even care. In my own mind, it's enough to believe it's a celebration of a turning point in my life.

Quitting smoking and joining the trial were the two best–and most health-transforming–things I have done in my life. Of course I tell my children that an even greater feat than quitting smoking would be to never have taken up the habit in the first place. But I'll take what I can get and hope the youngest keeps a level head and avoids curiosity, peer pressure, and the idiotic notion that "I can try it and not get hooked."

I noticed that I felt better. It wasn't right away, but over time. The hacking morning cough stopped. I could take a deep breath. I could smell even the most delicate of scents again. My taste buds exploded with excitement. It was especially nice to have my hair and clothing stay clean smelling.

During the TRANSFORMS study we had pulmonary function tests (PFT) to test our lung function since earlier studies of Fingolimod demonstrated a possibility of developing a slight asthma-like condition. I was both happy and relieved when I learned my lung function was normal. I felt like I had dodged a bullet. I was so glad I quit when I did.

I didn't use any smoking cessation techniques or tools unless you count those individually wrapped Dove Promises dark chocolate bars. I worked my way up to a pack a day of those bad boys. Between that and the sheer terror I felt going into the trial, they were enough to remind me of my goal of controlling my MS. To me, that was worth pushing through the cravings as they came at me. Taking them on one at a time and dealing with only the moment I was immediately facing.

It was the hardest thing I have ever done. I am proud to say I have never put even one single cigarette to my lips again (my secret tip for remaining a non-smoker).

I'm not writing this to be preachy. I'm not better than you because I don't smoke. I used to be a smoker and when you smoke, the most annoying person in the room is the recovered smoker. They want to foist their opinions and best intentions on you, figuring you never got the memo that it's bad for you, regardless of the Surgeon General's love note on the side of every pack. You'll quit when/if you are damn good and ready. I know that because I thought that.

All I am doing here is presenting some really interesting info in this article (which I'm sure you're going to rush right over and read, am I right?) about how MS is affected when you smoke.

Knowledge is power. I'm hoping anyone who has MS, smokes, and is miserable with lots of disease activity might consider the facts and conduct their own experiment. If you quit and start feeling better, let me know. I'd love to do a follow-up post.

Thanks for reading. By the way, my great readers boosted the Facebook "recommends" of my first article to nearly 400. I'm just fascinated by that and deeply appreciative.

So let's do it again! :)

Sunday, May 12, 2013

MS and Memory Loss: There's an App for That!

Last month a friend of mine sent me a link to a posting on Facebook. She knows I enjoy blogging and this post was a call for freelance writers to apply for a job with contributing to their all-new MS News Beat section.

I was under contract with Novartis at the time, as a Gilenya Guide for their Gilenya Go Program,  representing them as a spokesperson. I emailed them to ask if this writing opportunity would conflict with the speaking job. In the corporate world, decisions like this move at a break-neck speed  reminiscent of continental drift. Reminds me of the snail that got mugged by a turtle. When the cops got there and questioned the snail about the chain of events, his response was, "I don't know. It all happened so fast!"

In the meantime, there was a deadline for the job application, so I proceeded with that before I had my answer from Legal.

Who would have ever expected me to actually land the job? Certainly not I. I excitedly took the offer before Legal at Novartis ever had an answer. The awkward moment came when the powers that be handed down their decision. There was concern that, with my name on the byline writing about the subject of MS, maybe my views might be misconstrued as their views.

I can fully appreciate that and respect their objective to always be transparent. I felt bad for the person who had to break the news to me, but (as is always the case with the Guide Network that handles the Gilenya Guides) she was eloquent, compassionate, and very professional. I love them all over there and while this bridge to patient speaking is ablaze and burning behind me, there may be collaborations on other projects in the future. We parted ways with a virtual hug.

That's not to say that I didn't try running the idea of using a pen name by them, but only halfheartedly as I already knew the answer to that. Like my mother always says, "It doesn't hurt to ask".

Moving forward, decision made, I ventured into this all new world of writing something both meaningful and relevant about multiple sclerosis.

My very first article sprung from one of the "pitches" I was asked to do during the interview process.

Turns out writing news is... different. It cannot be accomplished in one pass as my lazy style of free-form blogging often (okay, always) appears. There are people who have to read, critique, and edit what I produce. That task goes to Heather, who has taken me under her wing teaching me all the stuff I always wanted to know about professional writing, but was too afraid to ask. The idea has occurred to me that I should see if she's game to take on the pastime hobby of doing the same to my blog.

My debut article is now in a glass case, behind velvet ropes, guarded 24/7 by armed guards in its published position over at

For Multiple Sclerosis Sufferers: Smartphones as Memory Aids

My first draft, while well written, was also done in a style more befitting a "Lifestyles" column, so out came the red pen and Heather went to work helping me craft it into a News Story. The very first thing she did was strike the entire center section of the article where I had originally compiled a list of useful apps to be used as memory tools. Since this was never published, it is mine to do with as I like.

I'm not one to see perfectly good words go to waste, so I'm presenting the list below in order that someone reading along might find the apps I've linked to useful.

Article Scraps & Leftovers...

Right out of the package, your phone is equipped with basic functions which can be used as memory tools. Did you know most cell phones have an alarm? Check your clock settings for an option to set an alarm for those short-term tasks, like remembering to leave home for an appointment.

Use your cellphone’s camera to photograph things you want to remember. For example, take a photo of your medicine bottle to have the label handy.

Use your smartphone’s “Contacts” list for more than storing just phone numbers. Contacts can accommodate email addresses, notes, mailing addresses, websites and more.
Beyond the basics

What if the alarm, camera and contacts aren't enough to handle all the memory boosting you need? Check out these apps, organized by memory goal, which are all free unless a price is indicated. 

The examples below come from Google Play, but thousands more can also be found on  iTunes, or the Amazon Appstore.

What was I thinking? Apps to organize your thoughts and plans.

Out of Milk Shopping List, a shopping, pantry and to-do list manager that also shows local grocery store coupons.
Evernote, a robust note organizing app that can even search text in images. If you want a quick reminder, but don’t want to take all those sticky notes with you, photograph them.
Tape-a-Talk Voice Recorder quickly records memos to yourself without typing.

What was I going to do? Apps to remind you of your routines.

Med Minder - Pill Reminder ($1.99)
Pageonce - Money & Bills money tracking / bill due reminder.
Car Maintenance Reminder Lite car maintenance reminder.

Where did I put that? Apps to help you find things.

We all lose our keys from time to time, but why search for things your phone will find for you?
MyCar Locator Free - Press the “park” button in the parking lot before you walk away from your car, and a moving pointer will lead you back to car.
Where's My Droid Phone Locator - makes a shrill ring and activates the camera flash to help you find it.
Maps - Google - type or say your destination and Maps will give you directions - either on a map or turn by turn directions. Both with or without voice guidance.

Desktop Memory Tools

For those who don’t have a smartphone but do have a computer, try using these tools as memory aids.
Google Calendar - appointment reminders by email, popup (for your PC) and text message.
Pinterest - Not just for pinning those crafts! Use pinterest as a visual bookmark organizer for important things you’ve found online. Researching MS symptoms? If there’s a photo on the page, it’s “pin-able”.
Pocket (formerly Read It Later) is a bookmarking add-on for your web browser that lets you organize things you want to save for later.
Free Alarm Clock - Desktop alarm clock with customizable settings.

Special Thanks

I would be remiss if I failed to give thanks where due. In the process of compiling my resume, (something I have not done in a very long time as I have been self-employed for all but the first few years of my adult life) I called on some of the big-hitters I've met during the past two years. They all foolishly agreed to risk their own professional careers by vouching for me if need be. I have no idea if Healthline actually reached out to them.

Craig Lipset
Head of Clinical Innovation
Worldwide Research & Development, Pfizer

Gerald Matczak
Community Manager, Lilly Clinical Open Innovation
Eli Lilly and Company

Jill Ozovek
Senior Program Director, ExLPharma

All of these people are amazing examples of humanity and I am honored to have crossed paths with each of them.

So, that's that. My life starts a new chapter. Had I invested as much time and effort into my next assignment as I have in creating this blog post, I'd be done already. Instead, I'll end this here so I can spend at least part of my Mother's Day researching the topic of my next piece...

The Effects of Smoking on Disease Progression in Multiple Sclerosis

(or at least that's the working title for now.)

Please be sure to "Recommend" the article on when you have read it. I need all the link love I can get.

Friday, March 22, 2013

C.R.O.W.N Clinical Conference Philly: my perspective

I just got home from two days in Philadelphia where I had the honor of being part of a patient panel speaking on the topic of social media and clinical trials. The purpose is to help Big Pharma figure out how to best harness the power of the internet to bring research kicking and screaming into the 21st century.

I was invited by Jill Ozoveck of ExlPharma and want to give a shout out to her for organizing a great conference.

The moderator was Linda Strause of Vical Incorporated where she is Executive Director and Head of Clinical Research. She also has the unique perspective of having been a caregiver to her late husband who suffered terminal brain cancer. She understands both the research and patient sides of this conversation.

The panel was comprised of myself, Kerri Sparling of Six Until Me, (addressing diabetes), and Sean Ahrens of (for Crohn's Disease). My two fellow panelists were young enough to be my kids, but smart enough to teach me a thing or two about not only social media but public speaking.

We gathered in the conference room at 7:45 a.m. to have a pre-conference discussion and strategize about the direction we wanted the presentation to take. It was going to be one with audience participation as we wanted to start a dialog with researchers and engage them in how to best utilize social media for recruitment and retention in clinical trials.

We had five minutes to introduce ourselves as the panel kicked off. In sticking to my tried and true patented method of When in a Panic, Get It Over With Quick, I volunteered to go first.

Let me preface what happened next with a little back story. I have been speaking as a patient on behalf of Novartis, sharing my experience with MS and Gilenya for over a year now. I have become comfortable with speaking and no longer practice all night the night before in front of a mirror, stressing out about the weird tics, funny southern twang, or letting a "ya'll" inadvertently escape my lips.

So, the night before this panel I was sleeping like a baby after glancing over the notes from our conference call a few weeks earlier, telling myself  "you got this!". Instead of sweating it, I went to sleep. So there was no organization to my thoughts whatsoever. As they mic'd me up with the lavalier microphone and Sean was busy working with the sound guy to figure out how to get his Power Point and video set up, I told them I wanted to go first because "no way am I following a slideshow intro."

But what came out of my mouth was just as much a surprise to me as it was to my audience. Totally random and from my heart. I figured I reach people better when I talk to them as if it's a conversation anyhow. It is more genuine and even though I'd like to be more sophisticated/organized and have my own video or slideshow, speaking as if we are all hanging out at the kitchen table is apparently preordained to be my style.

I opened with how happy I was to be there as part of the panel in Philly that day because I am from Florida and hadn't seen snow in thirty years. I got some laughter, but Kerri got more when she started her intro and said she didn't share my sentiments about the snow because she's from RI and she's "over it."

All joking aside, we had a great discussion and I think it was more than that. It was also almost a brainstorming session about how to connect with patients in order to recruit them using today's technology. My suggestion was to "go viral". If Grumpy Cat can do it and we have all seen Pepsi's test drive with Jeff Gordon then why can't Big Pharma reach out to the American public just to say "hey, we're here if you want a viable alternative to those treatments that aren't working any more." They wouldn't have to directly try to "coerce" people to join a specific trial, but let's face it, Big Pharma's research department needs a PR team.

Do what marketing does for your drugs after it gets approved. We know your hands are tied by the FDA when it comes to what you can and can't do, but like Kerri said (an analogy I will never forget) "There's still a lot you can do with handcuffs on!"

Let me illustrate what I think the problem is here...

Things have always been done a certain way in regard to how researchers view the patients, or "subjects" (a word that insinuates researchers are masters of their "kingdom" as Kerri pointed out, and we are the subjects.). This tunnel vision that has developed from countless years of focusing only on the data-gathering side and less on the human factor needs to be addressed.


When the conference broke for lunch, the attendees started pouring in. I was hovering near the buffet and jumped in front of the pack. There were huge dinner plates near the entrees and hot sides, but then over by the salads they had another stack of huge dinner-sized plates.


I heard someone say they had to go put their dinner plate down and come back for the salad because the plates were so huge.

My solution:

This was when I look around the room and saw the dessert bar. Small salad plates stacked up for you to carry your selections on. I grabbed one of those and put my salad on it. Problem solved, table less cluttered with huge Frisbee sized china.


The gentleman who had commented about the size of the salad plates, yet complied and took one because it was the "designated plate" commented on how smart I had been to use the dessert plate instead.


I see this as a clear demonstration of our two ways of thinking. He was an attendee from the research side of things, and I was a patient speaker there to hopefully give a panoramic view of the World According to Social Media to those researchers who can only see the sky from their vantage point of looking up from the box to which they have confined their methods.

Maybe it's because I'm uncouth and lack etiquette that I DARED grab a dessert plate and unceremoniously plop my mixed greens atop it and splatter it with vinaigrette while others watched in complete and utter disbelief (with possibly a little horror thrown in). But I just saw it as the sensible, logical thing to do. Why should my dining experience be defined by someone else's idea of what size plate I should use to transport my nutrition? The plate is but a soulless vessel that cares not what it carries. I should mindlessly believe that the person given the task of setting up the buffet did the right thing in grabbing the dinner plates to position next to the salad? What if later we all found out he was reprimanded sternly? "You fool! You put the dinner plates by the salad instead of the bowls you were told to use! You're fired!"

We as diners let the Pied Piper/Plate Provider lead us over the cliff of Unnecessary Table Clutter, mindlessly doing as we were instructed.

But I'm the type of person who hates to be told what to do. Ask my mother. I do what seems right and what makes sense. And the more empowered and confident I become, the less likely I am to care about what others around me might make of my odd behavior. My youngest son, who is a freshman in high school and learning how to fit in (grossly overrated in my opinion), is always on guard for me to say or do something unexpected and thoroughly embarrass him with my bold and blatant lack of concern for conformity.

Hence the dessert plate holding my salad.

What does this have to do with social media you ask?

Good question. The answer is nothing. And everything.

If we want to drag Clinical Trials into the 21st century kicking and screaming, and clinging to outdated methods, we need to only look as far as the dessert plate holding the salad.

Face it, your big dinner plates are crowding the table with your smidgen of salad.

Look for fresh ideas in places you haven't yet. Social media doesn't have to be the unknown, intimidating medium. Use it to your advantage. Knowing you are cuffed by the FDA in that you can't do all you want in terms of reaching your patient audience, you can still kick your feet and make some waves.

I want to say to patients about the idea of considering a clinical trial: "You can do this! It's not so scary and it opens up more options available to consider."

On the other hand, I want to say to researchers: "You can do this! Embrace social media and leverage it to educate people on what you're all about. Take away the bad rap that plagues Big Pharma. Where is your PR firm letting us know that each and every one of you got into this line of work because you are driven to make people's lives better?"

Connect. Educate. Recruit. Retain.

Expedite Quality of Life for everyone.

Use Twitter, Facebook, YouTube, Pinterest and any other conduit for connecting.

Help me get a panel of patients before the FDA so we can start a conversation about where social media fits into all of this. I'm here and willing to keep the conversation going. Let's do this!

The panel discussion ended all too soon and I had to depart after lunch to have a mini family reunion with my brother and his wife. They drove from Annapolis over to Philadelphia to spend the day with me.

We walked around Reading Terminal Market and had a great time. Sat down at a lunch counter to get a cheese steak and ended up having a pork sandwich instead because DiNic's doesn't do Philly Cheese Steaks. But the pork was fabulous.

My view from my room was something ingrained in my brain forever. Philly is a gorgeous town. Highly underrated.

For your viewing pleasure, I had grouped these photos at the bottom of my blog post. Actually, that's where blogger added them and I'm too lazy to rearrange everything. Enjoy!

I felt so small! High ceilings, huge mirrors, gorgeous accommodations.

I thought I'd check out what was on TV... until I glanced out the window. I was mesmerized just watching the city for a while.

The view went on seemingly forever.

So THAT'S why the room was so expensive. The 50lb terrycloth too big robes.

Almost late for the pre-conference meeting when I looked out and saw SNOW!!!

and another shot of the snow because you can't have too many pics of the snow when you're a Floridian. That's Reading Terminal Market under the big roof on the right.

Spotted a Regina Holliday jacket when I entered the conference room and snapped this pic before I realized it's Craig Lipset, my hero and mentor who interviewed me in Boston, making the "fashion statement". He's talking to Sean (, one of my fellow panelists.

A look at the setup. Slideshow to the left had the basic bullet points we were going to cover. Podium where Linda spoke from, and the panel table to the right behind the guy stretching. (I believe he and the other gentlemen were members of the panel which took place right after ours. I'm terrible with names.)

Another shot of Craig and a little more showing the arrangement in the room. The room was huge and the estimate of attendees was 200-250. All of them, eyes front and center. No trouble keeping their attention.

Craig again (he would NOT get out of the way. j/k Craig) and here you can see the table at which we sat. See the stairs to the right? I ended up using my hands to walk myself up them as there was no handrail and my perpetual state of MS dizziness was begging me to fall down.

The only outdoor photo I got of the venue. From my window in the back of the limo as we left at 5:45am to head to the airport. My brother got some awesome shots, however they are still on his camera so sharing them will have to wait. (Tapping my foot here, Dave. Can you hear that?)

Monday, March 4, 2013

My Diagnosiversary

My brother's birthday is Wednesday so I took Mom out card shopping. On the way home we were discussing how it would only take one day to reach him and let's see, what's today? March 4th? It won't be a problem.

"WAIT! March 4th? Really? Do you know it's been 14 years today since I was diagnosed with ms?" (I refuse to give it the power that capital letters infer). That's a long time. It's six months less than my teenager's life span. It's nearly half of my 30-year-old's life. It's elderly in dog years. It's over a quarter of my own life.

Then, as if it were a gift to me, I saw a post on Facebook where a friend who also has ms had shared this video:

I put the headphones on and gave it a listen. To my surprise I had tears streaming down my face. 

The tears at first were for sorrow at the loss of a life free of ms. Then they were from shame that I should cry when so many are suffering so much more from this disease.

I am truly blessed that I have found a treatment that has worked so well for me in Gilenya. I was led, almost pushed, down a path made by fate which brought me from darkness and despair, on the verge of suicide, into a light that now shines on everything. It's the light of Hope, the light of Time Bought. Being relapse-free this long has let me catch my breath. It's let me feel like I'm a part of my life again and not just watching it pass me by.

If not for my despair back then, I don't know if I could have had the courage to join the clinical trial. I would have let my hypochondria and fear prevent me from believing anything good could come from it. Perhaps I should be thankful that my ms was impacting my quality of life to such a degree that I didn't care if the trial killed me -- I was already contemplating death as a viable option.

Slowly, over these many years since starting the trial, I have let go of the constant fear of an impending relapse. Like a big shoe that hovers over my bug-like self, waiting to squash me flat, render me helpless. That's what ms is. The monster shoe we all try to escape. 

As if Kharma said "Look, about the ms thing, I'm sorry. Here, have this opportunity," I am now a patient advocate and have the honor of traveling the country, sharing my Gilenya experience and my passion for Hope with other ms patients. Everyone needs inspiration in life. I feel this is my calling. Nothing, NOTHING compares to a hug from someone who says "you touched my heart with your story." That's what it's all about. Connecting.

Got off on a tangent there...back to the video, which is what the post was originally about. Well, that and my diagnosiversary.

I noticed all the beautiful women in the video who have chosen to get tattoos "honoring" the disease. I have pondered the idea before. I have no tattoos, but this is something I have come very close to considering.

In the end I have come to the conclusion that I have given all of myself that I am going to give to ms. I fight it every day not to rob me of anything else. It has already scarred my brain and spinal cord, robbed me of so much time I could have spent involved in my children's lives rather than just watching them grow up. No way am I going to suffer more pain in the name of ms or let it scar my skin as well.

Besides, when the day comes that there is a cure, I don't want anything left to remind me of what I left in the rearview mirror.

This is ms awareness month. Go learn something, or share something, or donate something in the name of stamping out this dreadful disease. 

Do it so we can all quit marking our diagnosiversary and one day say "THIS IS MY CUREVERSARY!"

Now, THAT would be something to celebrate. :)

Tuesday, February 12, 2013

New Hope for ALS Patients - A Study with Gilenya

I think the scariest words a person could ever hear on this earth would be "You have ALS." I cannot begin to imagine the terror that must grip a person as their body stops responding to the brain's commands. To some extent, having multiple sclerosis, I have felt the fright of limbs that won't move or cannot feel.

Over the course of my disease I have had to use canes, a walker and even a wheelchair for brief periods of time. But, with a relapsing-remitting diagnosis, I have always had the luxury of making a nearly full recovery once the disease activity subsided between relapses.

Not so with ALS patients. Their disease marches on, unrelenting, unforgiving, robbing them of one thing after another. Taking away voluntary movement and confining the person to a prison within a body they can no longer control. The worst part is that there is no treatment to slow the slaughter of neurons.

I have always felt a strong compassion and sadness for those unfortunate enough to be diagnosed with ALS, feeling "there but for the grace of God go I." So when news of a possible treatment for the disease in Phase 2a clinical trials hit the wire this morning I could't wait to share it. The fact that it is my pride and joy, Gilenya, (TDI-132 aka: fingolimod, Gilenya™) that might make a difference in the lives of these patients leaves me smiling ear to ear.

It's my wish that amazing things are discovered and Gilenya can help lots of ALS patients live longer lives. More importantly, I wish them Quality of Life, because without that, living becomes just a prolonged wait for death.

Best of luck and Godspeed to all who enter the trial and to those who await the results.

A formal listing of the clinical trial can be found here:

Information on why Gilenya might be helpful for ALS (pdf):

Friday, February 8, 2013

You know you love your medicine when...

... you get a manicure to match.

Speaker retraining in Atlanta this weekend. I fly out today and come home Sunday. I thought it only fitting to honor the occasion with nails that reflect the packaging and even ring fingers that (sort of) look like the pills themselves.

Who knows? Maybe the manicure will be the visual reminder I need to remember to take them every day.

Wednesday, January 9, 2013

The Conversation with Big Pharma About Research Continues

I was invited by Gerry Matczak from Lilly Clinical Open Innovation to write a guest post for their blog.  They suggested around 1200 words. HA! Apparently they didn't realize how hard it is for me to get to the point. Family has learned to tune me out after the first five minutes or so, but fortunately for me, Big Pharma wants to hear what a clinical trial patient has to say. They gave me free range and let me talk until I was done. Fair warning: It ended up being over 2200 words.

Read it here on their blog:

Thanks so much to Gerry and Lilly COI for making this happen. Giving me a platform to reach those who might make a difference in the design of clinical trials is a priceless thing indeed.

Thanks also to Novartis for conducting the TRANSFORMS trial for Fingolimod (now Gilenya) and allowing me to take part in this massive study. I owe my very quality of life to you.

Tuesday, January 8, 2013

Out with the Old, In with the New

As most of you who have been following along already know, I'm a Gilenya Guide, or patient speaker for Novartis. I travel around the country and share my story with groups of multiple sclerosis patients to raise awareness of the disease and treatments available. I have agreed not to blog those experiences in detail, but I do like to share dates/places where I'll be speaking.

Out with the old

Last year was a great year for patient advocacy! I spoke around the country at Novartis events as well as non-Novartis events, advocating for those with MS as well as ePatients, clinical trial patients, and just patients in general.

It was a great start to what I hope will become an even bigger crusade in 2013.

The Disruptive Innovations To Advance Clinical Trials Conference  - September 2012

My Part @
The Disruptive Innovations To Advance Clinical Trials Conference  - September 2012

In with the New

I have several events scheduled already this year. As a Gilenya Guide, I will be speaking on the following dates:

This Saturday 1/12/13 in Tallahassee, FL:

Saturday, January 12, 2013
2:00 PM ET
Megan Barrett, ARNP, BSN
Jeri B
Lafayette Park Center
501 Ingleside Ave, Tallahasse, FL 32303

Tuesday, 1/15/13 in Glenview, IL outside Chicago:

Tuesday, January 15, 2013
6:30 PM CT
Catherine Meyer, RN, MSCN
Jeri B
1432 Waukegan Road, Glenview, IL 60025

In Atlanta on my birthday, 1/31/13

Thursday, January 31, 2013
6:30 PM ET
Robert Gilbert, MD
Jeri B
Brio Tuscan Grille Buckhead
2964 Peachtree Road NW, Atlanta, GA 30305

and I have 2 non-Novartis events coming in February and March:

One is in San Francisco on February 26-28, 2013:
eClinical Pharma Decision Making

The other is in Philadelphia, PA on March 20-22, 2013:
2nd Annual Clinical Research Operations & Worldwide Networking

I can't wait to get this year going! It's going to be a great year for patients everywhere. I can feel it.