4 posts tagged “Motion”

Hartfell shares about her PatientsLikeMeInMotion™ experience

Posted July 29th, 2015 by

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 included my donation from PatientsLikeMe. There were 63 walkers that took part that day, ranging in age from 7 years to 85 years old. I would like to thank PatientsLikeMe for pointing me in the right direction to organize this event and help raise awareness. The event went so well and was enjoyed by all!”

If you’re unfamiliar with how PatientsLikeMeInMotion™ 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!

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2014 recap – part II

Posted December 30th, 2014 by

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 launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
  • We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.

Partnerships
We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:

  • One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
  • Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
  • Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
  • LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
  • USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
  • Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
  • Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
  • Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.

Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:

In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:

For more PatientsLikeMe media coverage, visit our Newsroom.

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

Posted April 23rd, 2014 by

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, which did read MS. I was then referred to a number of specialists for further testing. This was a quick, life-altering diagnosis. So with this new diagnosis, I started to find out as much as I could about this disease. I went to a support group, talked to everyone who mentioned something about or knew someone with the disease, I read as much as I could about MS on reputable sites. I went to the National Multiple Sclerosis Society site and sent for hard copy information.

I was scared to have this diagnosis and thought I would be incapacitated in no time. But I did find out there were many new treatments out there and I needed to get on them ASAP. Once I started to get comfortable with this new diagnosis, I then started telling people about it, but that took at least a year or so before I was ok with it. My thought was I can either make the best of things and enjoy life, or give up. Everyone has issues at some point in their life. I came to the conclusion after researching this disease that I was lucky that it hit me at the age of 39 and not sooner.

I was so happy to learn about PatientLikeMe too. I’ll never forget that there was a segment on the news about your website. I remember jotting down the website and as soon as I got home, I accessed it and joined. I’ve found your site to be a great avenue to communicate with others and to find out how people are doing with different therapies. It makes you realize you are not alone.

At what point in your journey with MS did you become a fundraiser/advocate? What does that mean to you?

The year I was diagnosed I did do the MS walk in Cheshire, CT, with my mother in 2006. I wanted to do something for the cause. I solicited donations from co-workers and raised approximately $200.00. I did not start getting involved in fundraising until a friend of mine decided to get a dozen “gals together” and created a team around me called “Kim’s Cronies” to walk and raise money for multiple sclerosis – that was 2010. Our team grew to friends and family in 2011, and it was in 2012 when the captain of our team, Ellen Kearney, proposed the idea of a pasta dinner with raffles. Her amazing family was right behind her to support her idea and I went along for the ride as co-captain. When we began soliciting for raffle prizes from different business and acquaintances, we truly learned how generous people are in the community. So many people are willing to give and help out a worthy cause, it puts faith back in mankind. It allows me to realize I am helping others with multiple sclerosis, it’s not directly for me, and that’s an awesome feeling to give back to others. The other interesting part of this is that most people have some personal connection to this disease and want to help in finding a cure.

Can you tell us about your awesome team Kim’s Cronies? How did you get so many people together?

Kim’s Cronies started out with a small group of women wanting to do the MS Walk. It was a good cause, there was a personal connection and it was a beautiful day in May to walk in Forest Park. We basically did it for the camaraderie and support. As stated previously, more and more family and friends wanted to join our group and support the fight against multiple sclerosis. We have now grown into a group of 50 or more and are still growing. This group has joined in on the Kim’s Cronies Pasta Dinner with Raffles that attracts more then 300 people. This pasta dinner is a segue to invite anyone who is interested in raising money and wants to walk. We are all-inclusive, and we even have the elders join us the day of the walk for the picnic afterwards, even if they are unable to participate in the walk. It’s about showing support to make people aware of this MS and raising the money to fight this disease.

We’ve had the honor of sponsoring you and your team for multiple events. What keeps you coming back to PatientsLikeMeInMotion?

Kim’s Cronies deeply appreciates the generosity of PatientsLikeMeInMotion. We are so grateful that you are willing to support us in raising money for multiple sclerosis. We will continue to look to you for sponsorship. Kim’s Cronies wants to be associated with a great resource. I personally access PatientsLikeMe as a resource for any questions I have concerning this disease, medications, treatments…I remember messaging individuals on therapy changes and getting a message back concerning their experience with their treatment. I know of no other site that allows me this opportunity. It’s a great connection to have, and I let everyone know about the networking that is available to them through your website. It’s an honor to be associated with you.

What would you say to others in the community that might inspire them to get out there and raise awareness, too?

I truly believe I was given an awesome opportunity to be allowed to fundraise for a worthwhile cause as multiple sclerosis. This disease affects me personally, but I do not view this as I am doing this for me. I look at it as helping others. Helping others is a totally different outlook to have concerning a chronic disease. It’s a way of being of service to others and not just feeling sorry for myself because I have this disease. This gives one a sense of purpose in this world, volunteerism is so rewarding. I have plenty to keep me busy – I have all the responsibilities in life of your non-affiliated person, but I believe volunteering for any cause you believe in is a gift.

Kim’s Cronies will continue our fundraising as long as we possibly can. Every penny raised helps the fight.


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

Posted April 8th, 2014 by

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!

 

Quick facts:

More than 1,600 members from 83 different teams raised close to $18,000 through the PatientsLikeMeInMotion program in 2013.

Events took place in 27 states.

Patients represented 16 disease communities.

Thanks to everyone who participated in 2013! If you’d like to join the program in 2014, here’s all you need to do:

    1. Join PatientsLikeMe (it’s free!)
    2. Get 3 stars (your profile is up-to-date)
    3. Submit your team details (within 3-4 weeks notice of the event, please!)

But wait, there’s more! We’re following up with multiple sclerosis (MS) community member “2006,” who put together a huge team to raise awareness for MS. She’ll be sharing her experiences in an upcoming interview, so keep an eye on the blog in the next few weeks.