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Thread: 989 Participants for our Survey: Discovery, Research, Profit

  1. #11
    Join Date
    Mar 2003
    827 Participants...where are you from?

    89% are from the US (710) , Every state is represented except Wyoming. States with 20 or more participants: California (74), Florida (50), NY (43), Pennsylvania (38), Texas (31), Colorado (26), Ohio (26), North Carolina (26), New Jersey (26), Michigan (25), Washington (23), Massachusetts (20), Virginia (20)
    16 are from the UK
    18 from Canada
    10 from South Africa
    7 Australia

    We are moving toward 1000 and there is power in numbers! If you haven't taken the survey...there is still time!

    Be counted! We are meeting with companies that have our mission/vision. Patients own their data and should be able to decide with whom and when to share it and get paid!

    This will change health care! HELP!

  2. #12
    Join Date
    Mar 2003
    942 participants.
    For participants 900 to 1000, there will be 3 random drawings and each will receive a free bottle of Indrepta! To be a winner, you need to leave your email address which is optional in question 16. Then we will email you for your snail mail address if you are chosen.

    When we reach 1000, there will be a random drawing (1-1000) for a $100.00 gift card!

    We have had a number of requests to have the survey in different languages! (We are working on it!

    Thanks Planetary Sciences for all your work with Indrepta!

    please donate to our cause of Discovery, Research, and Profit! At!

  3. #13
    Super Moderator
    Join Date
    Dec 2011
    I found myself in a lively discussion with one of my doctor's about the business of Genomics and what they really want. Dr. "Nancy" was remarking that she'd completed her Christmas shopping, buying 23&Me for pretty much everyone in the family. This amounted to about 20 people. My doctor isn't stupid, she's aware that the $50 presents are not going to pay for the tests, they couldn't do it at $100 so they are making money at half the price.

    She showed me the details of the contract and you can agree to allow your depersonalized data used for science. They don't tell you that they intend to sell your depersonalized data to R&D facilities in pharmaceutical companies and Universities. Dr. Nancy sees nothing but good things coming from doing this. Her family will know more about their genetics and who knows what great discoveries can come from Science Research to help them down the road.

    What 23&me,, Helix and now other consumer genetic services are missing, could fill a book. They have the ability to further analyze your genetics and sell it. They are currently pretty sketchy tests. The quality of genetic testing depends on robust DNA amplification, more time on a critical process, the better. Sort of like laundry, a swish in the sink, delicate, Permanent Press and heavy duty each cleans the clothing better, revealing subtle shades of color clearly.

    I'm hoping to see 1000 plus. We should have every CFer and CF family in this. With stuff for monitoring our bodies like Fitbit and blue tooth features on our spirometry, glucose levels, plus all of the tests we CFers have way too many of, images and imaging reports paint an incredibly detailed profile, gathering the past and monitoring the present all bundled together and zipped up with our DNA to make an enormously valuable Genomic Diary, a virtual person who has a health file of gold. Not the same as consumer genetic services and like software, sold over and over.

    Jeanne has been the driving force behind this and it is for us. An added bonus is a small portion of the sale of our Genomic Diaries is going to fund now and for the future. She's devoted over 20 years of her life to providing a voice for the CF community. It's high time we paid her back.

    Please take the Survey and continue to participate in this fantastic opportunity!!!

    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

  4. #14
    Join Date
    Mar 2003
    Thanks LittleLab4CF for this great testimonial! Yes! We should continue with our survey and their is a big difference in the sequencing from companies like 23 and me and

    Today, 23andMe ( ) and Ancestry ( ) are the two leading
    personal genomics companies. Both use DNA microarray-based genotyping for their genetic
    tests. It is an outdated and significantly less powerful alternative to DNA sequencing. Instead of
    sequencing continuous stretches of DNA, genotyping identifies single letters spaced at
    approximately regular intervals across the genome. While human whole genome sequencing
    determines ~ 6.4 billion letters, microarray-based genotyping used by 23andMe and Ancestry
    identifies letters at only ~ 600.000 positions. Thus it generates small amounts of data that are of
    limited value to individual data owners and researchers.
    Individuals can learn much more about their personal genetic makeup from whole
    genome sequencing data and our work with Corey Nislow and the University of British Columbia has the whole genome sequencing data!
    We know through our survey that our community...does want to know if their data is sold to others and Yes! 23 and Me and others do sell the data they garnish even to pharma Genentech!
    So CARRY ON...
    if you have not taken our survey...
    We are closing in on a thousand participants!

    Salt and light,

  5. #15
    Join Date
    Mar 2003
    Wow! We are almost to 1000 paraticipants.

    For those of you who have already taken the survey, you know we are seeking, exploring, and interviewing companies that have or who are willing to work with us at developing a "high quality trait information platform". This will be able to track all your lifestyle and health information. We have been known to be the place where doctors "key in" to see how medications are working for our community.
    Now, we are aiming to provide "standardized data formats" . You will decide if you want to share this information and we are definitely on the watch to get you PAID for this important data information!

    so Thank YOU ...if you took the survey...and there is power in numbers as we go to 1000 participants and beyond!
    and please take it at: if you haven't already.
    And YES! We are global...a person just in from Sweden asked: Is this for people in Europe?

    YES! we have members taking the survey from over 22 countries and 49 states!
    Our latest country is PERU.

    Please JOIN us and Donate to our cause if you can! March 1 we will announce winners for INdrepta. We have joined with the Indrepta team to sponsor awareness of their botanicals for CF and our survey.

    The 975 participant and 1000 will each be awarded a $25.00 gift card

    Salt and Light,

  6. #16
    Join Date
    Mar 2003
    This looks like the week, we WILL reach 1000 participant! We are at 989! And two participants have come in from The Russian Federation!

    So what's next?
    1. We will leave the survey open...why? because it is a tool for education..we are learning from the answers and you may be learning from the questions. AND there is strength in NUMBERS!

    2. Corey Nislow, PhD of the University of British Columbia and I have meetings coming up with a respiratory company in Spain and Portugal and the CFF of Israel (they are very interested in suppporting our efforts) and an app company in Toronto.

    3. For those of you who are interested in digging deeper into what can be discovered with exome sequencing and Blockchain, I offer you this link:

    So KNOW, we are listening and moving into discovering the NEXT STEPS!

    We have a great Blake is ready to move on a new video (he did our great one minute video at, describing our work, and Melissa75 is a great editor.

    If you are working in this space: Blockchain/ExomeSequencing or just have ideas or want to make a donation...please contact me at [email protected].

    Salt and Light,

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