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Notes on

Updated: January 1, 2008

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The Why, How and What of Fundraising

June 12, 2007

P. C. Venkat
Editor & Publisher

Fundraising Suspended

We have reached our fundraising goals for the year and as of June 30, 2007 we will temporarily suspend fundraising while our publisher, webmaster and chief administrator (same guy – works for free) is undergoing treatment for his CLL. Suspending this labor-intensive activity will lighten up our operational commitments and allow us to concentrate our time and effort on maintaining our publishing and educational activities, including this website and Topics Alerts, all activities for which we lean on this guy. We will report on the results from our sponsored projects as and when they become available. For an update, please see Topics Alert #269

Thank You for your encouragement and generous support.

— The Topics Team

Answers to Some Questions You May Have

How and Why We Raise Money

A Short History: CLL Topics, Inc. was incorporated as a non-profit on October 27, 2003. Our EIN (Employer Identification Number, a sort of corporate social security number) is 90-0118681. Our website has been in existence since April 2003 and its predecessor discussion group was in existence on Yahoo! Groups since April 2002. The major patient education and support activities of CLL Topics were privately funded by the founders until November 2003. We have now expanded our scope to include the sponsorship of clinical trials and are asking for your support.

Why Are We Fundraising? The bulk of the funds raised will be used to fund CLL research including clinical trials such as Project Alpha, Low Dose Rituxan and Jab & Dab (see the entire listing at CLL Topics Sponsored Projects). For a formal statement of our objectives and philosophy in selecting and supporting clinical research, see Our Sponsorship Philosophy. There are several other promising therapies we would like to support - agents or protocols that may not be investigated for activity in CLL without our involvement. We believe that there are distinct advantages to funding clinical trials in this manner - that the interests and priorities of the patient community will be more faithfully reflected in the type of trials funded and the support of the community will factor into a higher level of patient participation in the trials. As of November 2006, we have raised enough money to fully fund our commitments to support four clinical trials. Our operating expenses are low and the bulk of funds received now are being held be held for future patient-sponsored research projects.

Directing some of the money that is flowing into CLL research gives us a voice in what is done and how things are done. Without our voice, the areas that will receive the funds are those where the research establishment and the drug companies see the potential for a large profits, rather than those that reflect the priorities of the patient community. As patients, we would like to assist research projects that offer one or more of these features:

  • low toxicity;
  • quick development for use in the clinic — we can't wait;
  • ready availability of therapeutic agents, not dependent on exotic manufacturing or restricted supply;
  • leverage - where a few patient dollars can be multiplied or used to produce important results that will attract additional funding;
  • low cost and therefore widespread availability to patients;
  • novel approaches, particularly those that are supportive of the immune system;
  • and clinical trials structured with patient preferences taken into account, translating into rapid patient enrollment.

What About Overheads? All the work of and our work related to the sponsorship of clinical trials is done by a team of dedicated, unpaid volunteers - patients, family members, friends and other generous members of our worldwide community. We do not have any paid employees, although two of us, Chaya and P. C. Venkat, work full time on Topics business. The Corporation does have some out-of-pocket expenses associated with running the website, obtaining published research material and covering the annual meeting of the American Society of Hematology, all of which constitute publishing expenses (one of our core missions) and true overheads associated with complying with non-profit regulatory requirements, maintaining Directors and Officers liability insurance, fees paid to PayPal for online donations and the incidentals common to running any corporation. You can see a breakdown in the article titled Our Sponsorship Philosophy.

We don't have much overhead and we intend to keep it that way.

Transparency and Timeliness Are Important to Us: We publish our financial statements and post all our important corporate documents online on our website. We are happy to answer any of your questions — and have a boxful of documents available at our registered office in Sedona, Coconino County, AZ, in case anyone wants to review them. We try and publish results as soon as the relevant information is available. If you wish to view the Corporation's financial statements or other records online, please visit our Acknowledgements page and look up the section on Corporate Information. If you have an interest in our records and an interest in red rock scenery, you can inspect them in person at our offices and enjoy the scenery en route. Just write to us and let us know.

Regulatory Background: (This is truly boring stuff.) We are incorporated in the state of Arizona (corporate file number: 1100944-8 with the Arizona Corporation Commission). As stated above, our EIN, assigned by the IRS, is 90-0118681. Our registered office is in Sedona, in Coconino County. We have no physical presence or offices in any other state, country or political entity. You may review the basic corporate data and some of our filings at the Arizona Corporation Commission website by clicking this link: Corporate Data.

Our Tax Exemption: We are organized as a non-profit under section 501(c)(3) of the U. S. Internal Revenue Code. Our application to the IRS for an advance ruling on our tax exempt status was approved on June 21, 2004. This ruling is applicable retroactively to October 27, 2003, the date of incorporation of CLL Topics, Inc. You can read the approval letter in pdf format by the following link: Advance Ruling Letter. A pdf of the application is also available at: Application for Advance Ruling. It contains regulatory disclosures and a statement of our objectives. 

Your Tax Deduction: (This has definite practical implications.) Donors are entitled to a tax deduction on their U. S. federal tax return (please refer to IRS Publication 17 for 2005, Chapter 24, page 151). Of course, as with everything else to do with taxes, your own tax advisor or the IRS are the final authorities on how this affects you. On our part, we will send you written receipts for your donations. Please retain these for your records -  they will prove useful at tax time. Foreign donors will have to verify the tax treatment of their donations in their home countries. We are aware that some overseas donors have been able to have their gifts to Topics recognized in their home countries. We support the international community of CLL patients, regardless of their location or citizenship.

Tax Receipts: We send out tax receipts for all donations made by check or through the donation of securities. Of course, if you made your donation by PayPal, you can print out a receipt from your PayPal account statement right away. Receipts are typically sent out towards the end of the year — and in January for anything received in the month of December. That is usually well in time for filing tax returns in the U. S. If the tax cycle is different in your home country or you require your receipt right away, please let us know so that we can expedite the mailing of your receipt. Many of our donors make several donations through the calendar year and mailing out receipts at year-end enables us to consolidate the receipts in one mailing.

Matching Gifts from Employers: (We wish more of our donors would look into this.) Most employers who have matching charitable gifts programs will require confirmation of our charitable tax exempt status. We will be pleased to provide your employer with a confirmation of our advance ruling if they require it. Please ask your personnel or employee relations department whether your organization will match your charitable gift to CLL Topics, a 501(c)(3) corporation providing patient support and education and promoting research into chronic lymphocytic leukemia. Employers who have such a program should be able to provide you with their printed instructions and gift forms. It might take a little effort but doubling your contribution this way is definitely worthwhile.

GuideStar Listing: We are listed in GuideStar, the national database of nonprofit organizations. This is a useful reference for grant makers, donors and other philanthropic organizations. Employers who are asked to match charitable gifts frequently refer to GuideStar to qualify the recipient organization.

Your Contribution is Important: We encourage all visitors, including international visitors to our site, to contribute to this effort in whatever amounts they can afford. Our activities are on behalf of the patient community throughout the world. After all, CLL does not respect national boundaries. Education is of value to everybody and research in any nation can benefit everyone. If what we do is of value to you, please do contribute. Your involvement and moral support goes a long way in gaining the respect and attention of the clinical research community — and this has truly important practical implications.

And, of course, we are delighted to hear from you if you want to contribute your time, energy and talents to participate in the work of the CLL Topics Team. As a matter of fact we could do a great deal more with some donated labor and skills. Send us an email with a little background and we'll figure out how to use your help. And thanks.

Your Contribution Is Entirely Voluntary: Our services to you are not conditional on a donation. We recognize that not everybody can afford a financial commitment and even for those who can, the timing may be inconvenient. In any case, the object of our effort is to help as many patients in as many countries as possible without regard to their ability to pay. Patient support, however, is a critical element in our ability to get things done with the research establishment and get a hearing from the health care delivery system. So we encourage your participation and show of support through donations.

Foreign Currency Will Do Fine: Personal checks are easy to write (there is no need to go to the trouble of getting a bank draft or cashier's check), and foreign currency amounts (except for some exotic currencies) are converted by CLL Topics' corporate bank into US dollars upon deposit. If you are not sure about your home currency, please email us and we will he happy to check with our bank about the convertibility of your home currency. PayPal will accept payments in any one of six currencies: US, Canadian, UK, Euro, Yen and Australian.

Donations by Check: (We prefer this — and so should you.) We find that contributions by personal check work well for most people. They are convenient for the donor. There is a paper trial - the cancelled checks are confirmation that the funds have been deposited in the CLL Topics' corporate account. No credit card numbers have to be entered into forms online, so this method is more secure than using credit cards online. In addition, with checks there are no merchant commissions involved so the entire amount of your donation goes to work.

Donations by PayPal: For your convenience, we have an arrangement in place to accept payments through PayPal. If you prefer to donate online or if you simply have difficulties with sending a donation by check, the PayPal donation button should work for you (this button has been disabled as of July 1, 2007 until further notice, in accordance with our suspension of fundraising efforts). You can send your donation in one of several currencies. In addition, PayPal offers the option of setting up a regular monthly donation. Please let us know if you experience any difficulty with this mechanism. So far, our experience with PayPal has been excellent. But — do be careful about the numerous PayPal-exploiting scams out there.

You Can Donate Securities: A few U. S. donors have taken advantage of the opportunity to donate securities that have been held for over a year and undergone significant appreciation. Such donors may derive tax benefits from making donations through this route — it is our understanding that US taxpayers will avoid recording a capital gain on the securities but can nevertheless deduct the full market value of the securities for tax purposes. Please check with your tax advisor or the IRS as to the the precise guidelines and treatment for tax purposes. We are happy to send you our brokerage account details if you plan to make a donation in this fashion. You should allow a few days before year-end to allow processing of the transfer of securities so that your donation occurs in the tax year you intended. If you are not a U. S. taxpayer but nevertheless live in a jurisdiction where this mechanism can be helpful, please do write to us with your input. If you have questions or information, you may write to us at the email address given below.

Send Us Your Questions: If you do have questions or thoughts on these notes or on our fundraising effort, we would be happy to hear from you. Please send your email to: mail.

We thank you for your generosity and thoughtfulness.

P. C. Venkat
Editor & Publisher

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Disclaimer: The content of this website is intended for information only and is NOT meant to be medical advice. Please be sure to consult and follow the advice of your doctors on all medical matters.

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Copyright © 2002-2007 CLL Topics, Inc. All Rights Reserved.

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Topic: Donations

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