ALS NEWSLETTER ISSUE 4 — October 2007
WHAT'S NEW AT PATIENTSLIKEME

The buzz about PatientsLikeMe is growing! In August, Business 2.0 magazine and CNN.com recognized PatientsLikeMe as one of 15 companies that will change the world. To be selected, a company must have "the potential to rewrite the rules of existing industries or open up entirely new markets."

We couldn't agree with this assessment more; after all, we began with that exact mission. But what's amazing is that we're already starting to achieve it. Thanks to the participation of thousands of patients like you, we're well on our way to creating "a fast bypass around restrictive privacy rules that tie scientists in red tape."

As part of the implementation of this sweeping objective, we're pleased to announce the upcoming launch of our HIV community, which we feel is an important addition to our coverage of life-changing diseases. If you know anyone affected by HIV, they can sign up here to be notified when the PatientsLikeMe HIV community is available.


GETTING TO KNOW YOUR PALS

At PatientsLikeMe, we believe in getting to know the person, not just the "patient." That's why we've decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature Steve , a two-star member from Fayetteville, North Carolina.

What are your interests and hobbies?

Since my diagnosis, I enjoy helping others newly diagnosed and getting them on the right track. Then there's the technological side; I'm always scouring the net for the next gizmo to help me overcome the challenge of life with ALS and keeping that glass half full. Being from Fayetteville, North Carolina, it's hard not to mention the military, ACC basketball and summer trips to the beach, the mountains and Carowinds. But ALS certainly puts its own twist into all aspects of what we previously called life.
For instance, my love for getting out and hitting that little white golf ball around has transformed into just being able to watch Tiger win another tournament. Other interests have been gardening, racquetball, tennis, beach volleyball, tinkering with the cars and going to any live sports event or concert. I'm also taking full advantage of the free movie admittance at the local theaters weekly.

What accomplishments are you most proud of?

My time in the US Air Force has been both the most rewarding and selfless aspect of my life, but I feel I gained so much from those 21 years that I came away from it with the upper hand, even though the reason I had to leave was medical retirement thanks to "Uncle Lou!" Other than that, I'm proud that I completed the "bible-in-a-year" reading, sung on-stage with Karen Carpenter, and that I'm a melanoma survivor.

What are your top three motivators in life and why?

I think the first would have to be what my boys, Shane and Vance, get from seeing how I deal with the challenge that is living with ALS. Second, I owe my life to Jesus Christ, who pulled me from the ruins of an immoral, mortal existence. Thirdly, to learn as much as I can in the time I have left, and to transform that into something I can give back.

What other PatientsLikeMe patients have you enjoyed getting to know and why?

This is the hard one, as I've taken something from each one of them and made it a part of me. I was so sad to hear of the passing of David Abell, who was so instrumental in moderating the Living with ALS Yahoo! Group. He was a mentor of sorts, and my wife has had several very educational conversations with his dad, Jerry.

Specific to PatientsLikeMe, BobbyB is about as reliable as they come, but then there's the twisted humor of Super Dave, always controversial, and others like carylnjay, my overseas penpal Petra, SheilaT, an author, and just anyone who teaches me a thing or two or makes me smile, and those are many!


THIS MONTH'S SITE IMPROVEMENTS

We are constantly working to improve our site. In this section, we'll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here is our top functionality enhancement for October:

We've retooled the global site navigation bar to make it easier and faster to access the most popular areas of our site. For example, you can now reach the Forum as well as our Symptom and Treatment databases from anywhere on the site.

If you have suggestions for other site improvements, tell us!
YOUR PROFILE STATISTICS
Help other patients by updating your profile today.

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