45 posts tagged “Openness”

Paul Wicks on the power of sharing data

Posted April 5th, 2017 by

Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world.

Now, we’re sharing a video of his presentation about what you and the ALS community has shared about living with ALS over the last 10 years.

Here’s what Paul had to say:

“We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.”

What do you think about Paul’s presentation? Share your thoughts in the forum.

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Caregivers and companions – PatientsLikeMe members talk about their service animals

Posted August 10th, 2015 by

Service animals are often a topic of conversation in the PatientsLikeMe community, and many members frequently share their experiences with their furry friends. For example, Ted wrote about his service dog Catti-Brie in his blog interview.

Here’s what other members are sharing about their animals:

“Just last night when I was having a rough dream [my dog] stood with his paws front paws on the bed and barked till I picked him up and he laid across me and snuggled me to sleep again.”

“I have a mobility service dog that helps with my balance. It’s like having a smart cane. When we go for walks she wears her mobility harness, but when we are home she only wears it when I’m having a bad day. She is also trained to do many other things like get items for me, and pick up things I dropped. She can also turn on/off the lights and open/close doors.”

“Mali is my mobility and medical alert service dog. She has saved my life twice so far… as well as told two of my friends when they had tumors. She went through a spell when she was younger when she thought she had to tell everyone who was ill where their boo boos were.”

Previously, members shared their experiences with service animals in a Canine Caretakers blog post, and others contributed to forum posts on the same topic. If you would like to share about your service animal, head to PatientsLikeMe. Don’t forget to share a cute picture of your pooch (or other animal)!

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