27 posts tagged “fundraising”

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

Posted May 11th, 2015 by

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 so grateful for the generosity of the PLM program. I feel so fortunate every time my family and I can contribute, to the financing of research for the cure.”

Quick facts:

More than 2,100 members from 113 different teams raised close to $24,000 through the PatientsLikeMeInMotion™ program in 2014.

Events took place in 32 states:

And represented 28 disease communities:

Thanks to everyone who participated in 2014! If you’d like to join the program in 2015, 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!)

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MS members share about their PatientsLikeMeInMotion™ experiences

Posted October 15th, 2014 by

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 or support. I have been to Washington, D.C. 3 times on behalf of the National MS Society, and I know that our stories being told to legislators help.

PatientsLikeMe has been a wonderful tool for support and also a great way to keep track of symptoms. I love that I receive valuable information about MS and data that they have collected. I also love that they support my teams and I when we participate in events, both monetarily and with their great tee shirts.”

Special1

“I have done the Southern California/Nevada Walk MS events every year since diagnosed in 2009. So I have participated in approximately 5 walks. The first year, I was not able to walk far because of fatigue and heat intolerance. The 2nd and 3rd year, I sat and cheered my team on. This year, I was so glad I was able to walk the 5k with my team of 32 members. We have grown from 14 members the first year. When I form the team, I always go with raising awareness and then concentrate on raising funds. The weather was cool this year, a great day to walk, and I am glad I was able to walk. Last year, the Beat MS Dance walk was started by “So You Think You Can Dance” member Courtney Galiano, and I participated in the event for the second time on Sep 13, 2014.

I have always been a people person, and since I have to be home so much because of symptoms from my MS, I love getting out and seeing new people, including people I meet online or through others. All have showed me that as long as I just keep doing what I CAN do in this new life of mine, I will continue to find reasons to smile. This last year one of our team members, a 16 year old, was diagnosed with MS, and it opened everyone’s eyes and reminded them that life can change at any moment. Value today.

I worked in the medical field for 15 years, and I medically retired due to cognitive issues. When working, I would push my patients to fight, whether it was high blood pressure, diabetes or any illness they were being attacked by. They would come back and thank me through the years. So when I was diagnosed the first year, I was glad to know I wasn’t just going crazy, but I didn’t know how to now be the patient. Slowly I fell into the role of patient, advocate and fighter. I have gotten calls from old coworkers to get info from me to give to patients who are newly diagnosed. Those calls made me a little sad, but also made me happy because I was still needed.

I first heard about PatientsLikeMe on a social media site. I signed on and connected with strangers who I now call friends, I log my meds and health info and sometimes print my health info out and take it with me to doctor’s visits. I like how I get an email asking me how I’m doing, and it’s so easy to use. PatientsLikeMe has also helped me raise awareness and funds for my walks and MS events since 2009.” 

CKBeagle

“I walk. I walk every day. I walk my dogs every day. I walk for my physical health. I walk to get outside for my mental health. For the past several years I have walked for the MS Society and I have the t-shirts to prove it.

Most recently, I have been a part of the Journey of Hope Walks that the MS Society uses to help provide additional funding for society-approved MS Clinics and MS Specialty Care Centers. Currently, I am team captain for our AbFab Concord Neurology Team for MS Specialty Care Center walk team. I know, bad name, but I had to make sure that everything was in there, especially the AbFab, because that is important. Why do I do it? I am not a neurologist. I don’t work for Concord Neurology. I don’t even work for Concord Hospital. I do volunteer at the “clinic” once a month as peer support. Did I forget to mention that I have MS?

The clinic is a wonderful service for patients with MS. On clinic days, they have the opportunity to meet with a neurologist, counselor, physical therapist, occupational therapist, social worker, nutritionist, MS Society representative and peer support to discuss any and all aspects of how MS affects their lives and how their life affects their MS. For the most part, I spend a lot of time asking questions and listening. I try to provide direction on what strategies I have tried to deal with different situations and offer an understanding ear for complaints. I encourage people to relay information to the doctor or therapists even if they think it is unimportant. I learn how other people are coping with the changes brought on by MS. I feel I get as much out of it as I give to it. We all have something to offer.

One of the things that I make sure to give people is the information on the PatientsLikeMe website. I have found it to be an interesting resource for information on treatments and also a way to track my health and attitude history. I especially enjoy the researcher interest on the site where you can provide input on treatments or general health through surveys.

On top of that, I LOVE the PatientsLikeMeInMotion™ program. It was how I first became aware of PatientsLikeMe. I got in touch with the community team, let them know when and where my walk was, kept myself as a 3-star patient and bam! I was accepted into the program. They made a donation to my walk and sent t-shirts for the team. Cool beans! The whole team loves the shirts and the donation helps the MS Society and the clinic. Now all I have left to do is the walk. For now that’s the easy part. Because I walk. I walk every day.”

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Spirited Support at the Jingle Bell Run/Walk for Arthritis

Posted December 24th, 2012 by

We’ve sponsored hundreds of fundraising teams through our PatientsLikeMeInMotion program, but we’re pretty sure this team wins the blue ribbon for most festive.

Yes, This Is the First Time We've Seen a PatientsLikeMe T-shirt Worn with a Red and Green Tutu

Please meet PatientsLikeMe member Kennqueen’s very colorful team, who donned their best tutus and striped socks for the Jingle Bell Run/Walk for Arthritis in Richland, Washington, on November 17, 2012.  Kennqueen has been living with rheumatoid arthritis (RA) for more than a decade, and her supportive family and friends came out to raise spirits and jingle in her honor while raising money for the Arthritis Foundation.

Festive from All Sides!

This particular Jingle Bell Run/Walk in Richland, Washington, part of the Tri-Cities area, raised more than $20,000 for arthritis research, while all Jingle Bell events across the country have raised more than seven million dollars to date!  How’s that for some holiday cheer?

Life Is Better with Teammates!

Inspired to get into the fundraising spirit in 2013?  Learn how the PatientsLikeMeInMotion program can help with t-shirts and a monetary donation for your team.

Until then, Happy Holidays from PatientsLikeMe!


Today’s Photo: Enthusiasm and Hope at Walk MS

Posted December 14th, 2012 by

“There is still no cure, but at least now, thanks to these fundraising events, there are advancements in patient care, and there is hope.”
Multiple sclerosis (MS) patient Judy

It may be winter now, but plans for next year’s disease-related fundraising events are underway.  The question is:  will you be taking part?

For inspiration, see Judy and Jim below in their bright blue PatientsLikeMeMe t-shirts before the start of Walk MS in Cranford, NJ, on April 15, 2012.  “When I was first diagnosed over 20 years ago, there were no therapies for MS patients and knowledge was limited,” says Judy.  “We’re grateful to PatientsLikeMe for their continued support for events that raise awareness and funds for MS research.”  She adds that the Cranford Walk MS event had “a large and enthusiastic turnout.”

Judy and Jim at the 2012 Walk MS Event in Cranford, NJ

Congrats to Judy and all of our PatientsLikeMeInMotion-sponsored teams for your efforts. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection. Thinking about organizing a team for next spring? Learn how the PatientsLikeMeInMotion program can help with t-shirts and a monetary donation.


Today’s Photo: 2012 Ride for Dads in Minnesota

Posted September 28th, 2012 by

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.

Wayne and Team in Their PatientsLikeMeInMotion T-Shirts

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.


The Ride of His Life: An Interview with Prostate Cancer Survivor Wayne Sticha

Posted September 7th, 2012 by

“I wanted to share my story to, frankly, save other men’s lives.  I discovered that very few knew anything about [prostate cancer].  Even less had had the PSA test.”

Wayne Sticha, 64, Founder of Ride for Dads

Over the summer, we shared two interviews with PatientLikeMe members conducted by our partner Patient Power:  one with psoriasis patient Lissa and another with multiple sclerosis patient Marcia.  Today, against the backdrop of National Prostate Cancer Awareness Month, we’re pleased to present the latest Patient Power video interview with member Wayne Sticha, a prostate cancer survivor from Lindstrom, Minnesota.

Check out Wayne’s interview to learn about his prostate cancer experience as well as how he was inspired to found Ride for Dads, an annual benefit and awareness motorcycle ride now in its third year.  What drives his passion for educating other men, who he says “tend to ignore the subtle signs of aging,” about prostate cancer?  And what are his aspirations for this growing event?  Hit “play” below to find out.

Wayne Sticha: Prostate Cancer Survivor Turned Advocate from Patient Power® on Vimeo.

Stay tuned for a post featuring one of Wayne’s photos from the 2012 Ride for Dads as well as the next installment of the Patient Power interview series.


Today’s Photo: Shake, Rattle and Roll

Posted August 10th, 2012 by

The heat isn’t letting up this summer – but that isn’t stopping our members from participating in disease-related walk/run events in their local communities.

For inspiration, please meet some of the members of Parkinson’s disease patient daddytom’s team, who joined together to raise money and show solidarity at a Shake, Rattle and Roll Run sponsored by the American Parkinson Disease Association in Texas.  From left to right are Connie, Paula, Dorothy and Larry (the latter wearing blue PatientsLikeMeInMotion t-shirts) as they triumphantly cross the finish line.

Daddytom's Team at the Shake, Rattle and Roll Run

Congrats to daddytom 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 growing Flickr collection.

Thinking about organizing a team for this fall?  Learn more about the PatientsLikeMeInMotion program today.


Today’s Photo: Walking Warriors for MS

Posted July 5th, 2012 by

As we get deeper into summer, there are disease-related walk/run events happening almost every weekend.  What they all share is an opportunity for patients, friends and family to come together in solidarity and raise money for research and patient services.

For inspiration, please meet multiple sclerosis (MS) patient barneyhouse and her “Walking Warriors,” who took part in a recent Walk MS event in Ormond Springs, Florida.  By signing up for our PatientsLikeMeInMotion program, the team was able to score bright blue PatientsLikeMe t-shirts and a monetary donation towards their fundraising goal. “My sister, who is six years older, has had MS for over 30 years,” writes barneyhouse.  “So although this is new for me, it is not new to me.”

PatientsLikeMe member barneyhouse and her "Walking Warriors" team

Congrats to the Walking Warriors team as well as all of our PatientsLikeMeInMotion-sponsored groups for your efforts to raise funds and awareness for your condition. We’re honored to support you in your journey.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team for this summer or fall?  Learn more about the PatientsLikeMeInMotion program today.


Today’s Photo: Raising Epilepsy Awareness on the National Mall

Posted June 18th, 2012 by

Summer is here, and that means there are disease-related walk/run events happening all around the country!

For inspiration, please meet epilepsy patient Monica (second from right), who led a PatientsLikeMeInMotion-sponsored team at the National Walk for Epilepsy in Washington, DC.  Held on March 31, 2012, the two-mile walk occurred between Madison and Jefferson Drives on DC’s famous National Mall.  “I do a lot of fundraising on my Facebook page, so my friends and family all know I have epilepsy,” says Monica.

PatientsLikeMe Member Monica and Team on DC's National Mall

Congrats to Monica 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 growing Flickr collection.

Thinking about organizing a team for this summer or fall?  Learn more about the PatientsLikeMeInMotion program today.


Faces Wanted: One Man’s Mission to Drive Awareness of Parkinson’s Disease

Posted June 15th, 2012 by

“I have a hope that this foundation has a short life. We exist to help fund and find a cure. To do that we need to generate and raise awareness of Parkinson’s disease and its impact to the public. Awareness in turn will aid in generation of funding. Funding for a cure and funding for the personal side of the disease. Programs to get people moving, walking, riding, dancing, and exercising.”

– Mike Justak,  Founder of Mike Justak Foundation for Parkinson’s Disease

When PatientsLikeMe member Mike Justak (MJUSAK) realized that Parkinson’s disease (PD) funding was lagging, he decided to take action.  His goal:  to “put a face to Parkinson’s” and highlight the fact that it occurs in patients under the age of 50 as well as older patients.

Mike founded the Mike Justak Foundation for Parkinson’s Disease, and this year he began working on a “Faces of Parkinson’s Video Wall.”  It’s a pastiche of videos submitted by PD patients around the country that he plans to submit to the Parkinson’s Action Network, state governors and US senators.  To add your “face” to the project, all you have to do is submit a short, close-up video stating who you are, where you’re from and what you do.  See Mike’s sample video submission below.

Having being diagnosed with PD in his mid-forties, Mike has also focused on raising awareness of young onset Parkinson’s disease (YOPD).  Check out the growing number of profiles of young onset Parkinson’s patients – from a musician to a teacher to an NBA player – on his foundation’s Younger Faces page.

As Men’s Health Week concludes, we’d like to honor Mike for his efforts as well as thank PatientsLikeMe members tiredoftired and Rick N for sharing their essays about depression and multiple sclerosis (MS) earlier this week.  We salute all of our male members for making their voices heard!


Six Days Until the Parkinson’s Unity Walk

Posted April 23rd, 2012 by

Parkinson's Unity Walk Is Saturday, April 28, 2012

Parkinson’s Awareness Month isn’t over yet!  This month-long effort is capped off by the Parkinson’s Unity Walk, which takes place Saturday, April 28th, in New York City’s Central Park.

The largest grassroots awareness event for Parkinson’s disease (PD), the Unity Walk is anticipated to attract more than 10,000 participants.  If you’ve never attended something of that size, it’s quite a lot of people.  Beyond the sheer scope of the event, there’s another noteworthy fact:  100% of all donations go towards research supported by the seven major US Parkinson’s foundations.*  In 2011, that came to more than $1.5 million!

The 2009 Unity Walk in Progress

Now in its 18th year, the Unity Walk is an opportunity for solidarity amongst the different PD organizations.  Admirably, these groups have shown there’s no need to compete for funds when you can come together as one.  “This event truly unifies the whole Parkinson’s community behind a common mission—supporting the best, cutting-edge research,” says Joyce Oberdorf, President and CEO of the National Parkinson Foundation.  “It is like no other.”

A PatientsLikeMe Member and Her Family at the 2009 Unity Walk Start Gate

What’s new for 2012?  First, there’s a new 1.4 mile walk route in Central Park – slightly longer than 2011 but shorter than in previous years.  (It is wheelchair accessible.)  There will be free coffee served this year, and there will also be four food trucks on hand.  Another fun feature is the Team Photo Booth.  Get a printed copy of your photo right away and then download a digital copy later from the vendor website.  Learn about other new aspects here.

Over the years, PatientsLikeMe has sponsored a number of Unity Walk teams through our PatientsLikeMeInMotion program, which provides bright blue T-shirts, a monetary donation and more.  We’ve also attended the Unity Walk and interviewed some of the PatientsLikeMe members present.  Check out the short one-minute video below featuring four members of Team PatientsLikeMe at the 2010 Unity Walk.  (Find other Unity Walk interviews on our YouTube channel.)

*All Unity Walk donations are split evenly among these seven US organizations:  American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, National Parkinson Foundation, Parkinson’s Action Network, The Parkinson Alliance, Parkinson’s Disease Foundation and The Parkinson’s Institute and Clinical Center.


Today’s Photo: A Celebration of Solidarity

Posted March 28th, 2012 by

The weather is warming up, and calendars are filling up.  That means it’s time to starting thinking about spring walk/run events for your health condition!

For inspiration, please meet multiple sclerosis patient NewLife (center), who led a PatientsLikeMeInMotion-sponsored team at Walk MS in St. Louis, Missouri.  Including a monetary donation from PatientsLikeMe, NewLife and her team raised $2,000 for MS research.  The group also shared a delightful day together.  NewLife says, “I was very touched by the support of my friends walking with me.  It truly meant a lot.”

PatientsLikeMe Member "NewLife" and Team at the St. Louis Walk MS Event

Congrats to NewLife 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 Flickr album.

Thinking about organizing a team for this spring or summer? Learn more about the PatientsLikeMeInMotion program today.


Today’s Photo: Texans in Motion for ALS

Posted January 9th, 2012 by

Please meet ALS patient alsgirl (front and center in the wheelchair), who led a PatientsLikeMeInMotion-sponsored team at the 2011 Walk to Defeat ALS in Dallas, Texas.  A longtime PatientsLikeMe member who is part of the ALS Public Registry, alsgirl has been living with this degenerative disorder – also known as Lou Gehrig’s disease – for 16 years.

PatientsLikeMe Member alsgirl and Her Texas-sized Team

Congrats to alsgirl and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your health condition. We’re honored to support you along your journey.  For more PatientsLikeMeInMotion team photos, check out our growing Flickr slideshow.  (And if you’re a PatientsLikeMeInMotion team leader who has NOT sent in photos, we encourage you to do so.  You just might be featured on the blog next!)

Thinking about organizing a team for spring?  Learn more about the PatientsLikeMeInMotion program today.