Topics Alert

Keep Your Money Where It Is Most Needed

December 23, 2024

Dear Members:

It is that time of the year when every charity known to man sticks out its hand and asks for your hard earned dollars. And here we are, trying to explain why we cannot accept donations to CLL Topics at this time, why we want you to keep your money in your own wallet where it is likely to do most good.

We take our fiduciary responsibility very seriously and we go the extra mile to make sure our financial picture is totally transparent. We have very little overhead expenses, since no one gets paid a dime. Your support as members of CLL Topics and as donors in our fundraising effort is highly appreciated. With your help we have been able to sponsor and fund four clinical trials, and commit to sponsor / fund a fifth trial in the next couple of months. Even after that, we have sufficient reserves for an additional clinical trial or two, as well as to support our current publishing operations. Bottom line, we do not see a need for additional funds in the near future, and we surely do not want to get into the game of raising money for its own sake.  

As many of you may know, all the research, writing, publishing and computer work at CLL Topics is done by two people: Chaya and me. The part that is hidden is the amount of labor that goes into administrative chores in keeping the non-profit entity going: banking, bookkeeping, auditing, maintaining board minutes, filing tax and other regulatory reports, sending out receipts. Chaya shudders at the mere mention of paperwork, so the only volunteer we have to do the grunt work is me.

As some of you might know, I am getting prepared for a stem cell transplant to deal with my aggressive CLL – and that leaves little time for additional projects. That is one of the reasons why we suspended our fundraising early this year, with a month's notice to our members. We decided that if we had to choose between activities, the one that would mean the most to our patient community would be our publishing activities rather than the general non-profit business of money-raising. We figured that with a little bit of luck we could keep the publishing going without taking on too much during the first six months of 2024.

We do plan to institute a fundraising drive in the second half of 2024, to top up our reserves and be ready for new sponsorship grants for clinical trials. In the meantime, please bear with us while we deal with the human part of the CLL Topics equation.

Stay well and enjoy the process of living. Many of you have written asking about my health - please accept my sincere thanks for your caring. I am doing well, trying to get the cleanest remission I can get ahead of the double cord mini-allo transplant at University of Minnesota. Chaya is not one to miss an educational opportunity, so we will be publishing frequent bulletins on how “Harvey” (our strictly hypothetical patient) fares as he goes through a very similar procedure. That’s an amazing coincidence!

With many thanks and our very best wishes for the holiday season,

PC
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Topics Alert