The Value of Openness: The PatientsLikeMe Blog

A multiple sclerosis (MS) diagnosis affects the whole family, which is why it can be great to get the whole family involved in awareness activities. Please meet PatientsLikeMeInMotion team leader PepsiGirl, who was supported by several family members at a 2011 Walk MS event in her home state of New York.

Congrats to PepsiGirl and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today

Every September, the Substance Abuse & Mental Health Services Administration (SAMHSA) observes Recovery Month.  The goal is to promote the societal benefits of treatment for substance use and mental disorders, celebrate people in recovery, recognize treatment providers and spread the message that recovery is possible.  As the SAMHSA slogan says, “Prevention works, treatment is effective and people recover.”

Recovery Month also inspires millions of people to raise awareness about addiction, share their stories of recovery and assist others who are still struggling. As one person writes, “Since I have attained recovery, I have accomplished all of my dreams - something I never would have imagined 26 years ago, when my dependence to alcohol and narcotics had created a hopeless life.”

Do you have a recovery story of your own?  Add your voice to this month-long celebration.  Or if you’re still struggling – or know someone who is – you may want to consider downloading SAMHSA’s free mobile app for iPhones/iPads/iPods. It’s a Treatment Locator that helps connect people with the services they need, whether it’s for mental health services or substance abuse.

Here at PatientsLikeMe, thousands of patients are sharing experiences, support and data regarding their mental health conditions and addictions.  For example:

• 7,619 patients report generalized anxiety disorder (GAD)
• 3,894 patients report tobacco addiction
• 3,027 patients report obsessive compulsive disorder (OCD)
• 2,046 patients report alcohol addiction
• 1,917 patients report drug addiction
• 1,416 patients report bipolar II disorder

If you are affected by a mental health condition or addiction – either as a patient or a caregiver – we encourage you to join our growing community. Learn about the path to recovery for others and connect with those who can relate.

Welcome to the fourth installment of our new PatientsLikeMeOnCall podcast series entitled “It’s Friday – Let’s Journal Club.”

This week’s interview is with PatientsLikeMe’s own Catherine Brownstein, PhD, MPH, who recently won a highly competitive award from the International Congress of Human Genetics (ICHG). One of our in-house Research Scientists, Dr. Brownstein captivated PatientsLikeMe headquarters last Friday with her Journal Club talk about what the ICHG award means as well as how the study of genetics can influence healthcare decisions.

Afterwards, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Brownstein to learn more about how the ICHG award is selected as well as how it spotlights PatientsLikeMe’s potential as a platform for genetic discovery. Listen in below to hear what Dr. Brownstein had to say about how your genetics can affect your condition – from how you metabolize drugs to how your disease will progress.

In February, we told you about veteran ALS member SmoothS and his efforts to bring to life the first and only fully automated, skilled service residence specializing in ALS. The Leonard Florence Center for Living opened in November 2010 in Chelsea, Massachusetts, and now SmoothS is working on bringing his groundbreaking concept to other cities.

Want to help this admirable mission? On Sunday, September 25, 2011, the center is hosting a Walk for Living event to raise funds for the Steve Saling ALS Residence and the Slifka MS Residence next door, both of which are part of the center. 100% of donations will go towards these two residences as well as the effort to build additional residences throughout the country through the ALS Residence Initiative (ALSRI).

If you are in the Boston area, you are invited to sign up for Team Smooth Saling ALS Residence. You can also make an online pledge here. Thanks to a generous matching program with The Herb Chambers Companies, every dollar you give will be matched 100%. In addition, all pledges are tax deductible and will help make a profound difference in the future of how care is delivered for people determined to live with ALS.

To learn more, check out the video below, in which SmoothS discusses “the dire need for residential living options for the chronically disabled.”

“ALS does not have to be fatal, and with your help, I will prove it to the world,” says SmoothS. “Until medicine proves otherwise, technology IS the cure. Thank you for your support!”