CLL Topics is our flagship website. It has the bulk of the research reviews I did in the early years of my involvement with the CLL patient community. It is still the place to visit if you want to really learn about this disease. It was the best thing I and my husband PC did together, as a team. Most of the content is very much relevant to this day.
Then PC passed away and my world changed forever. He was our webmaster, he was the one that brought subtle but unmistakable feel of colorful vibrancy, style and class to the CLL Topics website. He was the one who had the business skills to manage a non-profit corporation, and run it with squeaky clean transparency. With him gone, there was no way I could run that website or the non-profit corporation by myself. I did not have his unique skill set.
Out of ashes, a new beginning
So, we started this “Updates” site. It is much easier to manage. While the site uses commercial software, it has proven to be surprisingly bug-free and robust. Our daughter Radha has stepped up to the plate, she is now our webmaster. Kid has a day job that pays the bills and still puts in significant hours into this family obsession. How about a nice round of applause for her – I cannot manage this website without her enthusiastic and dedicated help.
My own writing style has changed over the years. I am less pedantic, less geeky and inclined to gush over some “cool science” stuff with no clear real-life impact. I am more blunt in my “two-cents” editorial evaluations. People tell me I have become more “opinionated” in my old age. My emphasis now is on stuff you can actually use, information and editorial comments that I hope make it easier for you to manage your own healthcare and therapy decisions. I hope my weird sense of humor survives, as also my belief in idealism, altruism. Life is not worth living otherwise.
I am still not a fan of unproven and anecdotal stories or gushy testimonials. My bias is very much toward clinical information published in peer-reviewed journals. I have no desire to become a “Cancer Guru” or be all things to all people. Thank you for taking our site guidelines seriously, thank you for making my job easier. You guys are a class act!
Our two-year track record
Updates came into existence January 1, 2009. In these two years we have published 110 articles. That is on average more than a new article each and every week of our existence. Our registered membership rolls keep growing – we now have several thousand members, in more than 90 countries around the world. The actual site traffic we get dwarfs the membership rolls since we do not require registration for people to read my articles. But only registered members can read the comment section, to give you guys some degree of privacy.
I would like to try & keep up this pace. But no guarantees on that front.
This much I can promise: none of these three sites will ever be sold to the highest bidder. There will never be advertisement or commercial content on our websites. We will not push snake oil. We will never share our member database with anyone. My only allegiance will be to you, the patient community. I do not have a crystal ball, I cannot promise you wisdom, but I can promise you my best efforts.
New initiatives in 2010
We started several new services in 2010 – CLL Topics Workshops. These workshops have been well attended by people living on the East Coast, since they are conducted in my new home town of Columbia, MD. I am unable to muster the time, effort or money needed to run workshops elsewhere. But if you want workshops in your neck of the woods, I will be happy to visit and conduct them – provided you can form a group willing to do the heavy lifting of organizing them and paying for them.
Since moving to Columbia (MD) early in 2010 I am in the thick of East Coast population centers, not in remote Sedona (AZ). That makes it possible for me to have face-to-face consultations with members who wish to see me. Please write and make an appointment ahead of time, so that I can prepare and make your visit worthwhile.
We now have a much smarter search engine. Please use it. The box is at the top right hand corner of all our websites. Type in a key word or phrase, and it will search all three of our websites: CLL Topics, Updates, and Harvey’s Journal. We have to pay for using this search engine service but I am very pleased with how much smarter it is than the free version. It will make navigation much easier for you. We have a lot of content – come and browse when you get the time.
Your side of the bargain
Now I need you to do your bit as well. Otherwise this whole effort would be meaningless and really not worth doing. You know the saying, if a tree falls in the forest and there is no one to see it… does it even matter? Without your support and without your acting on that support, I am just another voice in the wilderness, struggling to be relevant.
Those of you who supported our work in the past – I thank you for your support and I hope I will continue to earn your support in the future. And those of you who have not yet voted with your credit card or check book – if you value what we do, I hope you will step up to the plate in the new year. The dollars are obviously greatly appreciated. But even more important to me is the validation of our efforts your donations represent. Meaningful grassroots support in the patient community is our strength.
All our services are available, free of charge. I am still idealistic enough to believe in the honor system. We do not have guidelines for donations, we do not have compulsory subscription requirements, we don’t do fund drives, except this gentle hint once a year. You be the judge of what you can afford, what this website is worth to you.
A time and a season for everything.
Someday, Updates will close and I will bid you goodbye. Other websites will take its place, other patient advocates will fight the good fights and life will go on. Nobody and nothing is irreplaceable. And that is exactly how it should be.
But for now, “Updates” is the single largest CLL patient advocacy and education website of its kind in the whole world. What we say on this site matters. It has impact in the real world of clinical trials and drug companies. We need your active participation in our discussion section, your drive and enthusiasm, your getting the word out so that newly diagnosed patients find their way to us sooner, and last but not least, your financial support of our efforts.
A new day is dawning for CLL patients. New drugs are in the pipeline, with improved efficacies and lower toxicities. That makes it all the more important that you stay informed of the choices available to you. Working together, we might actually make a difference.