Survey#3 mHealth Attitudes is closed! THANK YOU

I

Imogene

Administrator
1051! and the 1050th participant receiving a $25.00 Gift Card is from Tennessee! Moving along...the 1075th participant will receive a $25.00 Gift Card...

Every Participant matters! Patients and Caregivers...we are listening and we are looking for the right app company...a dynamic app...filled with modules for CF, education, connections, AI, evolving in cryptocurrency and ways to Pay Patients for all the HARD Work you do collecting data...and hoping to continue...Discovery, Research, and Profit. Be sure and take the survey and tell your friends and your crowd on FB and beyond....
www.cftechnology.org

Thank YOU!
Salt and Light,
Imogene
 
I

Imogene

Administrator
Where are we going? We are exploring different app companies...who can bring us AI and Blockchain...remember YOU own your DATA and most are agreeing you should be paid for it.
We have some exciting meetings set up for this week.
We have brilliant members here at CysticFibrosis.com, professional designers and editors...we have many who are app gurus!
We will hire the community!
www.cftechnology.org if you haven't already taken the survey.
to help us Donate if you can....
http://cysticfibrosis.com/home/donate/


Stay Tuned!
Tell your crowd...
Salt and Light,
Imogene
 
I

Imogene

Administrator
We are a community of self-directed yet interconnected individuals, striking out into the unknown to build something better for ourselves and those that come after us—-sort of sounds like what is happening...

Join us through the survey...so far 1092 participants!
Discovery, research, and profit www.cftechnology.org
as we seek to explore technology apps and platforms that allow patients to control and connect their very valuable data.

a $25.00 gift card to participant 1100!

Please encourage those in your social communities to join us!

salt and light,
imogene
 
I

Imogene

Administrator
cure-e-us

Read my latest blog to see where the survey is leading us!

thank you all 1146 who took the survey. We are still open!

Www.cftechnology.org.


Melissa75, Corey Nislow PhD and I have been working on the White Paper for the Survey.
I will be speaking at the World Orphan Drug Congress

At the Congress, and with the great people I know as a founding member of the Aurora Project, we will begin making proposals...to have the right APP which keeps your data private and where you are able to be paid for it, if you choose.

Salt and Light,
Imogene
 
I

Imogene

Administrator
We are still moving ahead...1150 participant will receive a $25.00 gift certificate.

Melissa75, Corey Nislow PhD and I have been working on the White Paper for the Survey.
I will be speaking at the World Orphan Drug Congress

At the Congress, and with the great people I know as a founding member of the Aurora Project, we will begin making proposals...to have the right APP which keeps your data private and where you are able to be paid for it, if you choose.
We have been interviewing APP companies. Though the best designers are right here in this community.
Salt and Light
www.cftechnology.org

Happy Wedding Blake!
Salt and Light,
Imogene
My Favorite part of the survey is reading the Comment Section! Here are a few!

I would like to learn more
interesting idea you folks have here
Has double lung transplant June 2015.
thank you
My Aunt passed of CF at 34 years old in 2001
My only concern would be if this was implemented, would the monetary compensation be taking away from money available that would otherwise go to lab research for medical advancements such as orkambi.
This sounds awesome and I would love to hear more about it!
This is a good idea and I'd like to share it.
Wonderful ideas! Let’s get more info to cure this thing!
This is extremely exciting and I look forward to hearing more.
Please keep me updated! This sounds like a great thing!
Look forward to hearing from you.
Sounds very interesting
Anything I can do to help. I am 36 and I want to live to 80!
My daughter has CF and she loves computers/technology. The first thing she wanted to do with her Afflovest was to sync it with her Ipod!
Exciting!
My sons are not classic in that the have a residual mutation on CFTR and likely another on a second gene. They are not traditional or classic CF kids. I want to help the kids that are falling between the cracks, as they were, because they do not present classically.
Anything to better the lives of fellow fighters.
Can people in Europe participate as well?
 
I

Imogene

Administrator
Getting ready to speak at the Gobal World Orphan Drug Congress in Maryland next week.http://www.terrapinn.com/conference/world-orphan-drug-congress-usa/index.stm

I am excited to bring the results of our survey! 1163 participants so far!
The main slides are the data directly from the survey...reporting on how you keep records , your privacy concerns, and the unmet need for a platform that is “easy to use” and allows you to decide what happens to your data.
We still “on” with $25 to respondent 1175!

keep on
salt and light,
imogene





 
I

Imogene

Administrator
The 1175th participant was from Utah! We are ending the survey at 1200...so the 1200th participant will receive a $50.00 gift certificate.
Then I am off to the World Rare Disease Drug Congress in Maryland. I will be speaking on Friday April 27th at 2:40 pm edt.

I will share my presentation with all of you and we are planning for a big Zoom.us conference with all who took the survey.

Please think of me (pray for me) whatever is your Karma! this week as I meet with many genetic and pharma companies at the terrapin conference. When I go there, it is like "speed dating", there will be 15 minute meetings set up all around the conference. I have meetings set up with some genetic companies and NORD also.
I will keep you updated
www.cftechnology.org for the last 25 participants!
Salt and Light,
Imogene
 
I

Imogene

Administrator
We are at 1186! Very close to the close of this amazing survey!
I am bringing all of you to Maryland this week to the World Orphan Disease Drug Conference.
I will tell them 3 things:
1. Introduce the Community (the survey tells a LOT)
2. Introduce the Unmet Need (this community needs a comprehensive APP/Platform to keep all your quantitative and qualitative DATA) and sell it if you choose.
3. Ask them for help!

Please think of me and say some prayers or however you meet the spirit...wherever it leads you.
I am excited and Nervous but I know and love all of you!
Thank you for the opportunity you present the world.
Friday at 2:40 is our presentation!
Salt and light,
Imogene
 
I

Imogene

Administrator
I am in Maryland at the Gaylord hotel and the world Orphan Drug Congress. Actually, I am staying at my first Airbnb. So much less expensive and lovely! I will be speaking tomorrow. I have meetings today.
We now have 1189 participants! The 1200th participant will receive a $50 gift card.


Participant 1185 from Washington says it best:

“This is an exciting concept to open communication between the actual creators/scientists and patients-without using the doctors as translators. They have enough work keeping is alive, we can't always expect them to ask all the right questions and pass on helpful info. As much research and care cf doctors and scientists do, they don't wake up every morning praying that the first breath they take won't be their last, then work all day to shatter the 'pred' value limits. I think this will open a new world of info and products to make our lives healthier and easier. THANKS!”


 
I

Imogene

Administrator
I am back from the conference! It went very well and I have a few blogs to tell the story!
Our survey is almost to the 1200th participant. I met leaders from Rare Disease Communities in South Africa, Russia, Finland, Iceland, Brazil, Canada, Malaysia and more. I really did NOT know how prevalent CF is in Asia! Yet, it is.
There were the leaders of Rare Disease Organizations and then there were the leaders of specific rare diseases.$50.00 to our 1200th particpant!

http://cysticfibrosis.com/cure-e-us...preview_nonce=21c0297d8b&post_format=standard

Salt and Light,
Imogene


2
 
I

Imogene

Administrator
We ended the survey at 1212 Participants! Wow, you came through with loud voices.

We found that data privacy, security and monetization are significant issues.

I would want to know if the app company sells my data 68% (Patients) 78% (Care Givers)
I would stop using the app is my data was sold without my permission 62% (Patients) 74% (Care Givers)
I would be concerned with the apps privacy policy 52% (Patients) 59% (Care Givers)

I would keep using the app if I received some of the revenue from data monetization (49% Patients) 39% (Care Givers)



 
I

Imogene

Administrator
Survey#2 Mobile App Features is CLOSED! We had 200 Participants! Thank YOU all who took the survey!
Participant 200 is a Caregiver from the USA. This dad is concerned because his child has very rare mutations and there are no studies for them at this time!

Survey#3 mHealth Attitudes is now opened!
Participant 25 and 50 will receive Amazon 25$ gift cards.

What is your attitude toward mHealth?

We are planning a webinar to give out the results of our surveys and continue the discussions the surveys have started.

Salt and Light,
IMogene




 
I

Imogene

Administrator
Hi All!
Our Survey#3mHealth Attitudes is up to 85 participants!
Participant #75 received a gift card. A patient from Minnesota.

The 100th and 125th participant will receive $25.00 gift cards!

We are still interviewing App companies...but we have narrowed it down and we have a second interview today...so stand by!

Salt and Light,
Imogene
 
I

Imogene

Administrator
Survey #3https://www.surveymonkey.com/r/NR9PRDY

has 100 participants! 25.00 gift cards to participant 125 and 150!

Participant 100 is from Ohio and received a gift card.

lots happening behind the scenes. Other rare diseases are following our lead...with surveys to hear the voices of the community. Blockchain and healthcarevis on the forefront as everyone claims ownership of their data and the important work of managing it!

salt and light,
Imogene
 
I

Imogene

Administrator
This Survey Closed at 208 Participants! Thank YOU! We will be reporting on this survey. The 200th participant was sent a $50.00 gift card. This went to a Caregiver from Michigan!
Stay tuned...Survey#4 will be on Spirometry.
Salt and Light,
Jeanne
 
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