Today’s Photo: 2012 Ride for Dads in Minnesota

Earlier this month, we shared a video interview with PatientsLikeMe member Wayne Sticha, who founded the Ride for Dads in 2010 to raise awareness of prostate cancer. Since September is National Prostate Cancer Awareness Month, we wanted to close out the month by sharing one of Wayne’s photos from 2012 Ride for Dads, which involved approximately 70 motorcycles, made five stops throughout Minnesota and generated $1,100 for the Prostate Cancer Foundation this summer.  PatientsLikeMe was proud to support this community event with a monetary donation and bright blue PatientsLikeMe t-shirts as part of our PatientsLikeMeInMotion program. Congrats to Wayne and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection. Thinking about organizing a team – or even founding an event like Wayne did?  Learn more about the PatientsLikeMeInMotion program today.

E-Patient Dave’s Top Internet Resources

We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer.  Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend.  Case in point, our President and Co-Founder Ben Heywood was on a panel with him at the Military Health System Conference just a few weeks ago. For this particular “high-speed” panel, each speaker was given just 12 minutes to share their story.  So what did E-Patient Dave do?  Exactly what any good digital age citizen would:  he covered the important things and then directed people to his website to find all the related websites and resources.  Given that he’s a cancer survivor and e-patient advocate who believes in “letting patients help,” we were curious what links E-Patient Dave recommends for others who are seeking to take control of their health and join the e-patient movement. Here’s a sampling of Dave’s top resources along with a brief description: All About the E-Patient Movement, and Its Founder, Dr. Tom Ferguson (“Doctom”) Society for Participatory Medicine, its journal and its blog (the hub) Medical Self-Care (pioneering 1985 article by Dr. …

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Three Ways to Stand Up to Cancer in August

Stand Up To Cancer (SU2C) was founded in 2008 to mark “where the end of cancer begins.” Since then, the organization has raised over $100 million for cancer research through television specials and other fundraising efforts. SU2C aims to become an unstoppable movement, to accelerate groundbreaking cancer research and to bring together the best and brightest in the cancer community through collaboration instead of competition. This is done through two types of unique grants: Dream Team Grants given to multi-institutional groups that work collaboratively and Innovative Research Grants given to high-risk projects that could potentially be high impact. Ready to stand up to cancer too? There are three ways during the month of August. 1. USE YOUR MASTERCARD AT RESTAURANTS SU2C has partnered with MasterCard for a program called “Eat, Drink and Be Generous” that runs through September 1, 2011. Simply use your card for dining out (or taking out), and MasterCard will make a donation to SU2C, for a total of up to four million dollars. 2. SHARE A PRICELESS MOMENT ON FACEBOOK “Cancer holds a magnifying glass to our everyday lives,” writes SU2C. So what does your everyday life look like? Share a snapshot on the MasterCard Everyday …

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Let Patients Help: The Undying Mission of E-Patient Dave

“Patients know what patients want to know.” – Dave deBronkart Blogger, author and international keynote speaker Dave deBronkart is a familiar name at PatientsLikeMe, as his writings and health talks tend to strike a chord with us. You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe. After being diagnosed with Stage IV kidney cancer, Dave faced a grave prognosis. He read that the median survival for his condition was just 24 weeks from diagnosis. Then he joined a social network for cancer patients and learned of a treatment called interleukin-2 that most patients never hear about. Happily, this treatment would eventually save his life. Today, E-Patient Dave is a healthy fellow as well as an outspoken advocate for many things we support. For example, he believes patients are “the most underutilized resource in healthcare,” and that patients should have access to their own medical data. He argues that only with complete data can a patient crack the code on his or her own health situation. As co-sponsors of the Declaration of Health Data Rights in 2009 and proponents of our own unique Openness Philosophy, we wholeheartedly agree. To learn more about Dave’s remarkable …

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Remembering Jimmy V

If you’re a longtime college basketball fan, you definitely know Jim Valvano (“Jimmy V”), the beloved former NC State basketball coach and award-winning broadcaster. Valvano’s battle with bone cancer galvanized the sports world, leading to the creation of the The V Foundation for Cancer Research by ESPN and Valvano in 1993. 18 years later, the foundation has raised more than $100 million for cancer research. July 3rd through 13th marked “V Week,” when The V Foundation raises research funds each year in honor of Valvano with the ESPY Celebrity Golf Classic and an auction of signed sports memorabilia and one-of-a-kind sports experiences. If you listen to ESPN Radio, you may have heard them auctioning off these great sports items over the last 10 days.  The auction has now ended, but you can still make a donation at any time. Finally, if you haven’t already seen it – or it’s been a while – this is also the perfect time to watch Valvano’s famously moving ESPY Awards speech, in which he announced his foundation and gave it his trademark mantra – “Don’t give up, don’t ever give up” – just eight weeks before his death. It’s a speech that will make you …

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Taking It to the Streets: The Spring PatientsLikeMeInMotion Report

Every year, PatientsLikeMe sponsors run/walk/bike teams around the country through PatientsLikeMeInMotion. Led by a three-star member – someone with a complete health profile at PatientsLikeMe – each team receives bright blue PatientsLikeMe t-shirts, business cards and a donation towards their fundraising goal. Some of the events our members participate in include the Parkinson’s Unity Walk, the National Walk for Epilepsy (Epilepsy Foundation), the Walk to Defeat ALS (ALS Association) and Walk MS (National MS Society). What’s happening this year?  2011 is off to a great start with 30 sponsored teams as of the end of June.  When you compare that to two years ago – when we sponsored around 40 teams for all of 2009 – you can see how the PatientsLikeMeInMotion program has grown.  Wondering whether any of these spring teams were raising awareness for your condition(s)?  Here’s the list of conditions represented for 2011 thus far: MS ALS Parkinson’s Cancer Epilepsy Autism Prader-Willi Syndrome Mental Health We’re thrilled to support our members in this way, and we especially love seeing the positive connections that are forged when our members meet “offline” at these uplifting events.  That’s why we’ve asked PatientsLikeMeInMotion team members to submit their favorite photos from …

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Let’s Talk About Men’s Health

Did you know that, on average, American men are more likely to live sicker and die younger than American women? This has been called “the silent health crisis in America” by Dr. David Gremillion of the Men’s Health Network, and it’s one of the startling health statistics for men being brought to the surface during National Men’s Health Week, which takes place this week, June 13-19, 2011. Today, a special event is being held in Times Square in New York City with racecar drive Terry Labonte and health expert Dr. Harry Fisch to kick off the week. The theme is “Tune-Up Men’s Health,” with both speakers encouraging men to take care of their bodies the same way they take care of their cars. One reason is that women are 100% more likely to see the doctor for annual exams and preventive services than men. In accordance with this trend, women outnumber men here at PatientsLikeMe. Out of our 106,453 members as of today, only 17,294 of them are men. That’s less than 20% of our membership. Yet in contrast, men die at higher rates than women from the top 10 causes of death, including heart disease, cancer, injuries, stroke, HIV/AIDS and …

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National Cancer Survivors Day: Meet a True Survivor

National Cancer Survivors Day was recently celebrated on June 5th. According to the organization behind it, the purpose of this annual event – now in its 24th year – is to “show the world that life after a cancer diagnosis can be meaningful and productive.” To help illustrate this inspiring message, we’d like to share an interview with TysabriSept08, a survivor who continues to work and thrive while battling both multiple sclerosis (MS) and breast cancer. 1.  Tell us about your first diagnosis with breast cancer in 1999. Well, I was annoyed and pissed. I already had MS. Didn’t exactly like losing a breast. I could not have reconstruction with an implant because of immunosuppression. Any drug I took for MS would lower my immune system, making infection more likely. I was not about to go through all the surgery needed to use my own body tissue. Slender, I do not have any to spare. Also, I had to work and did not want a long recovery period. I had the mastectomy on a Tuesday and was back on the lecture platform the next Wednesday. I did not do chemo or radiation because it would have negatively affected the MS. We …

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