Half-time status report

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“Updates” made its debut on January 1 2009, a one year experiment to see if we can keep alive the crusade PC and I started with CLL Topics.  Fortunately for us our daughter has been more than willing & able to step into her father’s shoes.  We are now half way through the year and it is a good time to pause and take stock.  I would like to give you a status report as well as ask for your feedback.

  • When Updates went online I hoped we would have reached the 1,000 mark in registered members by the end of the first year.  I am totally blown away that six months since coming online we have 2,000 registered members.  We have members in just about every corner of the globe and there is a steady stream of new members each and every week.
  • Our reach within the patient community is reflected in the impact we have had on clinical trial recruitment.  Two trials we reviewed (the NIH/NCI trial and the Vaccine trial at Nevada Cancer Center) got sold out within days of our published reviews.  Each trial now has a waiting list of patients who want to volunteer.
  • Hopefully we had some impact on the FDA advisory committee’s vote on Humax-CD20 (ofatumumab, trade name Arzerra) by testifying and highlighting patients’ perspective on this important drug.
  • We have published 32 articles thus far, averaging little over five article per month.  With a single exception we have stayed on topic.
  • We have upgraded our service with email alerts announcing each new article, something that our members seem to appreciate.  Thousands of you read the articles within days of publication and many of you have participated in the active discussions that follow each article.  I am delighted the participation seems to be increasing with more and more of you getting involved.

Dollars and Sense

I do not believe in fund raising just for the sake of getting more money. Dollars matter, but your vote of confidence has meant a great deal more to me than the dollars.  Thank you.  I am happy to report we have met our annual goal for donations and enough is enough.

Therefore, you will notice we have removed the “Donate” button and related pages from Updates website.  We may re-initiate donations again beginning of next year if they are needed. For now, my sincere thanks to all our generous donors.

If you have signed up for a recurring monthly donation on PayPal you might want to visit the  PayPal site and cancel further donations for the year.

Feedback: Now it’s your turn.

  • Please take a few minutes to complete the survey. It will take less than a couple of minutes of your time and you can access it by clicking on this link: survey
  • It is important that we hear from as many of you as possible to get a fair and accurate picture.
  • After a week of so to give everyone a chance to respond, I will publish the results of the survey on this site so that you can see what our patient community has to say about “Updates”.
  • Your responses to the survey are anonymous, I will not know the identity of the respondents.
  • If you have comments that are not covered by the survey, please feel free to use the “comments” section below.  You are also welcome to write to me personally, as always.

Please speak up.  Your opinions matter to me and it really helps to maintain the two way communication.  In my darker moments it is all too easy to feel like a voice in the wilderness.

Be well,

Chaya

Update: We have completed the voting phase of the Six-Month Survey! Thank you to everyone who participated. We will be publishing our results in the next few days.

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