5 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.