PatientsLikeMeInMotion

Fundraising for a health-related charity walk/run? Get sponsored by PatientsLikeMe!

Looking for ideas for raising more money for an upcoming cancer walk, MS bike ride, or other health-related charity event where you’ll be hitting the streets? Learn more about PatientsLikeMeInMotion! It’s a program that sponsors you and your team as you walk, run, cycle (etc.) with a nonprofit organization to raise funds and awareness for your disease or health condition (psst—PatientsLikeMe gear included). Read on! PatientsLikeMeInMotion has grown a lot since we launched it back in 2009! Members have raised funds for cancer, multiple sclerosis, ALS, epilepsy, kidney disease, psoriasis, mental health and more (just take a peek at our Pinterest board). In 2017, 89 members and their teams (with a total of nearly 2,000 participants) raised awareness and over $14,000 for their diseases. In the first half of 2018, 73 members from 24 states and their teams have already participated and raised more than $18,000. Interested in sponsorship by PatientsLikeMe? Here’s how to apply: Join PatientsLikeMe (membership is free)! Make sure your profile is up-to-date. Submit a request with your team and event details, including your preference of spiffy T-shirts or PatientsLikeMe hats (like the one above). We’ll confirm the details and you’ll be on your way. (See the full guidelines here to learn more.) Past participants, inspire others. If you’ve been a part of PatientsLikeMeInMotion, feel free …

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“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa

Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with new members in the community. We caught up with her recently to learn more about how she copes with ALS, and here’s what we learned … 1.  Give us a glimpse of a regular day in your life. What are some challenges you face? What do you most enjoy? I need assistance with most things now. I am in a power wheelchair 95% of the day. I will occasionally transfer to a recliner with a lift seat on top the cushion. The biggest challenge I face is constantly changing strategies to remain as independent as possible as the progressing nature of this disease takes away my ability to do even simple tasks. I can no longer speak and I use an iPad with speech software to communicate. I really enjoy getting outside to be around some plants or flowers. I was an avid gardener before ALS, …

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Shining a light on lung cancer

What began as one awareness day back in November of 1995 has grown into Lung Cancer Awareness Month, now in its 20th year, as the lung cancer movement expanded and activities increased. Lung cancer is the second most common cancer in both men and women, but is the leading cause of cancer death in the United States.[1] Although the risk of developing lung cancer is highest in smokers (about 90%[2]), many people who do not smoke develop lung cancer each year. Luckily, there are plenty of ways for you to get involved and help spread lung cancer awareness throughout the month of November – and year-round. Shine a Light on Lung Cancer: This year’s 7th annual global event, hosted by Lung Cancer Alliance, is taking place on November 5, and is largest coordinated awareness event for lung cancer in the U.S. The lighting of the flashlights in local communities honors survivors and loved ones, and provides hope, inspiration and support for everyone touched by lung cancer. Find the Shine a Light on Lung Cancer event near you! Do your part in fundraising for a cure: Participate in the event of your choice, on your own or with family and friends, …

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Hartfell shares about her PatientsLikeMeInMotion™ experience

PatientsLikeMe members hail from around the globe, and recently, 63 people gathered on the coast of Scotland for a walk to raise awareness of IPF and help people with IPF through Chest Heart & Stroke Scotland. The coolest part? The event was organized entirely online by PatientsLikeMe member Hartfell, and through the PatientsLikeMeInMotion™ program, everyone was excited to get out there and hike. Here’s what she had to say: “My experience with being diagnosed was quite complacent, as I had never heard of idiopathic pulmonary fibrosis (IPF). But when I read about it, it was a big shock. I found PatientsLikeMe online and was so glad because there was so much information and I was able to communicate with people with the same illness. I decided to organize a sponsor walk 5 months after I had been diagnosed to raise awareness of IPF. I have been a keen hill walker (hiker) for 23 years, and I organized a coastal walk at Kippford, with 3 levels of walks to cater to all abilities. We had a fantastic day with weather views and company and we raised £1,453.68 ($2,268.44), which was brilliant. The money went to Chest Heart & Stroke Scotland, which …

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PatientsLikeMeInMotion™ 2015: Celebrating 7 years of PatientsLikeMe members giving back to their communities and raising awareness

For those of you who don’t know, our PatientsLikeMeInMotion™ program has been running since 2009—how time flies! Join us in celebrating our 7th year with a recap of 2014, our biggest year so far! Last year, we had the honor of supporting 2192 members across 32 states that participated in a range of events and had a lot of fun along the way! Some of the events included a motorcycle ride, a golf tournament, a MuckFest, a Halloween Run and Relay, and a Cake Sale to boot! If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what some members had to say: “Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding or support.” “It is thanks to these fundraisers that there are now therapeutic options for patients like us. When I was first diagnosed, there was NOOOOOOOOOOOOOOOOOOOTHING. While there is still no cure, we have evidence that research is making strides and there is greater reason to hope. I have always been …

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2014 recap – part II

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do. At PatientsLikeMe Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014: We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE The community celebrated the sixth anniversary of PatientsLikeMeInMotion™. We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015. Data for Good …

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MS members share about their PatientsLikeMeInMotion™ experiences

PatientsLikeMeInMotion™ is a way to celebrate our three star members (super health data donors) and sponsor them at events so that they can raise awareness for their condition. If you’re passionate about advocacy and you’re participating in a walk, run or other fundraiser on behalf of your condition, learn more and sign up right here.  We caught up with three MS community members who are active participants in PatientsLikeMeInMotion. They shared about the events they’ve been a part of over the years, why advocacy is important to them and several ways PatientsLikeMe has helped them manage their MS. Scroll down to read what they had to say.  Ajcoia  “Since being diagnosed in 2002, and after my sister was diagnosed in 2001, I have participated and captained every event the Greater Delaware Valley MS Society chapter has offered. This includes the one-day walks, MS150, Muckfest MS and Challenge Walk MS. My favorite event is the Challenge Walk MS, in which I have participated all 12 years. I have met so many wonderful and inspiring people through this event, which brings me back year after year. Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding …

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“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™

Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy and fundraising events with her now legendary team, Kim’s Cronies. She spoke with us about her diagnosis with relapsing remitting MS, the evolution and growth of her fundraising efforts and just how much the MS community on PatientsLikeMe means to her. You were diagnosed with relapsing-remitting MS in 2006 – what was that experience like? My experience with being diagnosed was probably like everyone else. “Shocked.” My symptoms started with visual changes. I had Lasik surgery done 3 years prior and thought that something was going wrong because of that procedure. I went to the eye doctor and he mentioned optic neuritis, and being in the health care profession, I knew that was usually in relation to multiple sclerosis. Already, my mind started racing thinking all about the negative things related to MS. Within a week, I went to see my MD and had an MRI, …

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PatientsLikeMeInMotion 2014: Celebrating 6 years of PatientsLikeMe members giving back to their communities and raising awareness

It seems like it was just yesterday when PatientsLikeMeInMotion was launched, but it’s been going strong for more than 5 years now – wow, how time flies! We’re celebrating the 6th year of PatientsLikeMeInMotion with a recap of 2013, the biggest year so far! We had the honor of supporting 1,611 members across 27 states who participated in everything from a JingleBell race and the MS Muckfest to a golf tournament and a motorcycle ride. These people raised money for their favorite nonprofits and rallied everyone to promote awareness for their health conditions. If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what a few members had to say: “I feel so fortunate every time my family and I can contribute, with [PatientsLikeMe’s] help, to the financing of research for the cure.“ “We love participating in the PatientsLikeMeInMotion program. It’s a wonderful opportunity for our cause to not only earn money, but we love having our volunteers sport the blue PatientsLikeMe shirts at our events! It’s a win-win for us!“ …

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With you every step of the way- PatientsLikeMeInMotion

Many of you are helping to raise awareness about your conditions. You’re not only encouraging support and donations, you’re spreading knowledge and eliminating stigmas. We want to help support your disease awareness efforts too, with PatientsLikeMeInMotionTM. Over the years, we’ve sponsored hundreds of fundraising teams through our PatientsLikeMeInMotion program. Let us sponsor your team next as you walk or run with your local nonprofit organization to raise awareness for your disease. Your whole team will get free t-shirts to wear, a monetary donation and more! “There is still no cure, but at least now, thanks to these fundraising events, there are advancements in patient care, and there is hope. We’re grateful to PatientsLikeMe for their continued support for events that raise awareness and funds for MS research.” – PatientsLikeMe member Judy Learn more about PatientsLikeMeInMotion and check out a few of the many awareness teams we’ve sponsored. The Walking Warriors The Jingle Bell Run/Walk Judy and Jim

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