Here is a blog from our partner:
Corey Nislow PhD
http://cysticfibrosis.com/letter-from-corey-nislow/
Corey believes (after meeting you and me) and being part of our survey...there is a CALL for Change in the way Research is Done!
Happy New Year!
Salt and Light,
Jeanne
636! The 625th participant is from Florida and received a $25.00 gift card. Who will receive a $25.00 gift card as number 650? The survey is still open! www.cftechnology.org
Read one of our latest blogs...and the interesting responses from Kate, Brook, and Imogene...help us explore this interesting technology.
Why? It may be a new way to pay patients for their data and 90% of those taking our survey at www.cftechnology.org would like to be paid for their data...
548 Participants...most from the USA! But let's reach out to the world...21 countries have responded so far!
548 participants.
The 550 participant ....$25.00 Gift card!
Salt and Light,
I posted a blog sent to me by a young mom with a child with a rare disease.
We may need to explore the Blockchain technology as we move forward with an app that pays the patient for their data.
Blockchain is powerful and secure but NOT GREEN as Kate points out in her comment.
What do you...
If you are a resident of the US and a: Pulmozyme User please take a short survey (5 minutes) and receive a $15.00 Gift Card.
Need 23: CF Patients: (18-29) or a
Nee 37: Caregivers of a (5-17 year old with CF)
Please email info@cysticfibrosis.com and we will send you the link.
Salt and Light...
543 Responses from 48 states! and 22 countries~ We are still aiming for 1000! The 550 respondent ...$25.00 gift card.
Thanks everyone! It is having a ripple effect as more people are becoming curious.
Of course, there is a lot of work left to do as we leave the known world of "not being paid...
Thank you! The 525th respondent received the $25.00 Gift certificate. They hailed from FLORIDA! We have contacted the Israeli CFF and they will introduce us to the heads of the European CFF...Do you think we will reach 1000 participants?
A $25.00 GIFT certificate is offered to the 550...
We have 509 responses! So many great comments too. Tamika Grubbs RN and I will be presenting some of this great information at the PanagoraPharma.com conference in Summit NJ on Monday!
Thank you all for keeping the survey front row on all the Social Media sites. We have great things going on...
The 500th participant was from Colorado...We are going to 1000! Your voices are being heard...and YES you want to be in the marketplace and Paid for your DATA (90%) and you will collect more data if you had mobile devices!
Reach out to your networks...let's keep the number of participants...
Every single response matters! Yet, we are stronger with numbers...that is why if we are serious about an app where each person owns their own data and we can choose to share it for Discovery, Research and Profit...we need the MOST participants!
So if you already took the survey...talk...
Hoping to get to the 500 mark for Thanksgiving (which is this Thursday in the USA). We are at 479 participants!
We are offering a $50.00 gift certificate to the 500th participant. (as we have already done for the 100th, 200th, 300th and 400th )
Thank you!
Some interesting statistics...
So far we have had 444 participants! The 500th participant will receive a $50.00 Gift Card! www.cftechnology.org to take the survey!
We received many comments (at the end of the survey) and here they are:
Thank you for helping improve the CF world!
this survey...
For those who ALREADY took the survey and the 9 still needed, Gazelle Global is offering a $40.00 Gift Card.
We still need 9 more Non Pulmozyme Caregivers of children 5-17.
Please email: info@cysticfibrosis.com for the correct link
Thanks!
Imogene
Hi LittleLab4CF! Leave it to you...a geneticist....to tell it "like it is"~ I think many will read this and wonder about their own data....who owns my data? Certainly, any member living into his 60's with CF has VERY VALUABLE DATA! So many of our caregivers and young patients look to you...
Thanks Dank! These are great points...as LittleLab pointed out. We are at 440 participants...still more lurkers who may be curious and want to weigh in?!
Category 3.
Caregivers of those 5-17 year olds who have Never taken pulmozyme. $25.00 gift card for a 10-15 minute on line survey.
thankyou!
click the link when ready to proceed.
http://survey.gazelleglobal.com/CF
Thank YOU all who have participated!
We still need:
Group A patients, Pulmozyme users – 10 Teens ages 14-17 $40.00
· Group C – Caregivers, Never used Pulmozyme – 9 more needed $25.00 for a 15 minute on line survet
http://survey.gazelleglobal.com/CF
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