ALS NEWSLETTER ISSUE 15 — September 2008

Hello everyone. This month I want to focus on the social side of being a PatientsLikeMe member. When I browse the forum, it strikes me that there is one thing that we aren't short of: passion.

For example, there has been passionate discourse lately about a lot of good topics, such as what might have triggered ALS symptoms. There has also been passionate support of PALS and CALS going through a rough time and even the donning of PatientsLikeMe t-shirts!

While passion can produce heated discussions, the important thing is that this too has been shared. Some people have chosen to take a break from the forum for a while, but I hope they will be back. Additionally, I hope we can all strive to respect and embrace our differences in viewpoint. If there's anything I can do, please let me know. This is a dynamic community, and even the difficult times contribute to our learning curve, as this recent thread discusses.

Thank you for sharing what makes you jump for joy as well as what makes you want to pull your hair out in frustration. There is an old adage that "a problem shared is a problem halved." Let's keep "halving" it, shall we?

--Emma Willey, Community Manager

JOIN THE CONVERSATION

Check out some of the hot topics in the forum. Then jump in with your own questions and answers!

Do you experience pain due to ALS?
"My ALS hurts," writes SheilaT. Share your experiences with pain, a symptom that may not always be perceived to be part of the ALS spectrum.

Encouraging more awareness of ALS
How "visible" is your ALS story in your community? Discuss how PALS and CALS can help to raise the profile of the disease and be advocates in their day-to-day lives.

My worst power chair accident
Ouch! Thank goodness for a healthy sense of humor. Read some of the most entertaining "wrecks" experienced by fellow members - and be safe out there!

GETTING TO KNOW YOUR PALS

At PatientsLikeMe, we believe in getting to know the person, not just the "patient." That's why we interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature schemera24, a three-star member from Stamford, Connecticut.

1. Describe your favorite moment from this summer.

The day I got the news that I was going to be a godfather to my best friend's baby. She is having some problems post birth. And she is a fighter like me! Also, going to Vegas for the telethon and meeting all the people who are facing the same challenges was special.

2. How has your condition affected your work life?

I was in medical device sales covering the Manhattan area, selling hip and knee implants. My work life was predicated on being highly articulate. I was selling to doctors and then teaching them as well as operating room staff how to implant during the surgery. (I was actually in the operating room during surgery).

I was bulbar onset. At first, I thought I was going insane. It was intermittent at first and then it was all the time and, at that moment, I got nervous and went to see a doctor. I was retired at the age of 33. Not by choice. I am 35 now.

3. Tell us something that very few people know about you.

I was a child actor until age 13. I was in a series with Jeff Goldblum called Hometown, and I did some commercials and theatre. Ice hockey was much more important at the age of 13 so I quit. I ended up playing hockey in college. What might have been.....

4. What keeps you coming back to PatientsLikeMe?

The info on ALS and anything that makes life for us PALS and our caregivers easier. The forum is great, and I enjoy welcoming new patients to PatientsLikeMe. And of course, the humor in the forum!

WHAT'S NEW AT PATIENTSLIKEME

It's raining good news this month! First, we are excited to announce that the PatientsLikeMe family is growing. We recently launched three new communities: Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) and Devic's Neuromyeltis Optica (NMO). You might not be familiar with these diseases or their acronyms, so here's a quick primer.

• Progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) are two rare neurological conditions known as "Parkinson's Plus" syndromes. PSP is a rare brain disorder that causes serious and permanent problems with control of gait and balance. MSA is a neurodegenerative disease marked by a combination of symptoms affecting movement, blood pressure and other body functions.

• Devic's neuromyelitis optica (NMO) is a mysterious condition that shares some features in common with multiple sclerosis. Like MS, Devic's involves inflammatory lesions on the optic nerve and spinal cord, but unlike MS, it tends not to involve lesions of the brain, has a more severe course and can be considered fatal in some cases.

If you know anyone with PSP, MSA or NMO, please invite him or her to join PatientsLikeMe today.

In other corporate news, PatientsLikeMe was recently honored with two prestigious innovation awards. The Boston Business Journal featured us in their August 15th special supplement called "Champions in Healthcare." We are looking forward to be one of two companies presented with an "Innovators Award" at their September 26th ceremony.

On top of that, PatientsLikeMe has received international recognition from the Prix Ars Electronica International Competition of CyberArts . We were one of two companies selected for an "Award of Distinction" in the Digital Communities category. We proudly accepted the award last weekend in Linz, Austria.

As if that weren't enough to put a skip in our step, we were spotlighted in several publications recently. Check out our favorable mentions in Newsweek ("Power to the Bottom"), The San Jose Mercury News ("Critically Ill Find Companionship"), Nature Biotechnology ("Calling All Patients") and the World Health Care Blog ("Unleashing Health Data").

The word is out!