3 posts tagged “ALSA”

Being an Advocate for ALS

Posted June 7th, 2011 by

Last month, we had the opportunity to interview PatientsLikeMe member t1961, who attended ALS Advocacy Day, held May 8-10, 2011, in Washington, DC. What does it mean to advocate for your disease on Capitol Hill? How can you personally make a difference? Check out the interview below to learn why this ALS patient felt the need to get involved and “put a face on this monster.”

ALS Advocacy Day

1.  What is ALS Advocacy Day?

ALS Advocacy Day was a national conference with ALSA Chapters of the USA and with patients with ALS (PALS) and their families and caregivers (CALS). We met in Washington, DC, where they held several information sessions on topics from Medicare to Familial ALS (FALS) to Congress 101. Each PALS and CALS with their local ALSA Chapter met with their home state Congressmen and Congresswomen. The purpose was to ask for more funding for the National ALS Registry and the ALS Research Program (ALSRP) though the Department of Defense.

2.  Why did you decide to take part?

My voice is for all the other PALS, whose worlds’ have been turned upside down by ALS. Personally, I want a treatment and cure. I don’t want other young grandmothers not to be able to hold their grandbabies, like me. Or to be able to play Simon Says or Duck, Duck, Goose. I went to tell my story, the heartache, the pain this disease has cost my husband, daughters and grandchildren. To put a face to this monster!

3. We heard you met up with several other members of PatientsLikeMe at this event. What was that like?

Yes, I got to meet some PatientsLikeMe members, and it was wonderful. PatientsLikeMe is an extended family. We are all from all over the world, but we became brothers and sisters to each other. We understand what each others’ daily lives are like. We laugh, cry and mourn together. I know if I have a question, I’ll get an answer, and we have become very creative with how to do normal daily things.

4. You’re both active offline and online at PatientsLikeMe. How has PatientsLikeMe helped you with your ALS?

First of all, every new PALS I meet at MDA clinical checkups or support group meetings, I ask if they are on the PatientsLikeMe website. If not, I give them the site’s address and explain that it’s something that they need to get on. PatientsLikeMe knows more than the doctors, who slowly watch and take notes on us slowly weakening and dying. PatientsLikeMe PALS/CALS can tell you what medicines work best, what is the best power wheelchair for your lifestyle, how to remodel your bathroom, what it the best kind of handicap van and where to locate them. The list can go forever.

5. What are some of the things you would want to tell a newly diagnosed patient about ALS?

Enjoy your family and friends. Take it one day at a time. Get your affairs in order. It’s okay to cry and mourn for the things that you won’t to be able to do in the future but keep living now. And talk about ALS and its effects on you and your family. Educate the people around you about Lou Gehrig’s disease. Remember: research+ education = treatment. Funding + research + treatment = CURE!

6. What is something few people know about ALS ?

It’s not a painless disease. It knows no gender, age, race.

PatientsLikeMe member jdevita


Flickr-ing PatientsLikeMeInMotionTM

Posted August 30th, 2010 by

Ever wonder what your fellow members were up to on their sponsored walks and runs in various states across the country? Last week, PatientsLikeMe launched a Flickr page for the PatientsLikeMeInMotionTM program. Now you can see photos of members just like you in motion!   We are excited to share the experience of sponsored teams and three-star members with everyone.

Since its inception in 2009, PatientsLikeMeInMotionTM has sponsored more than 115 teams across seven disease communities.  With over 2, 100 participants to date, the program has given many members the chance to demonstrate their PatientsLikeMe spirit as well as connect with others who have shared similar experiences.

It’s always great to see how PatientsLikeMe members are just as passionate offline as they are online.  Now, everyone can catch a glimpse our members in action from New York to Ohio to California!  The PatientsLikeMeInMotionTM Flickr page currently hosts photos from walks in the ALS, MS, Parkinson’s, Transplants, Fibromyalgia and Mood communities…with more to come.  We are proud to feature events such as The National MS Society‘s “Walk MS” series, ALS Association’s “Walk to Defeat ALS” series, Parkinson’s Unity Walk, and events run by the National Alliance on Mental Illness (just to name a few). Have photos you would like to submit? We would love to see them.  Email us.

Thank you to all the members who have contributed their time and photos to PatientsLikeMeInMotionTM. You continue to inspire others.  And thanks to all the members of the PatientsLikeMe community for continuing to share.


A Year in Review: PatientsLikeMe in 2009

Posted December 31st, 2009 by

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year!

Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of img_8741-300x225our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions).  Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ’09:

I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”

“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis berlin-lithium-poster-207x3001AGM in Athens and updates on our lithium study at the International ALS/MND Symposium).  In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform.  By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question:  “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.

The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.”  Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing.  Here are some highlights from ’09:

  • The National SummitInnovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events.  Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil.  You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
  • Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.

Happy New Year!
- The PatientsLikeMe Team