Announcement of RFW/WCF merger, Dick Mann

I think it's quite significant that Arnie Smokler join Dr. Robert Kyle as the only two individuals who thus far have been recognized by the RFW for their work in searching for a cure for WM. They both are giants in this field.

In connection with the award to Arnie I am particularly pleased to bring you news tonight of other major developments of great significance to everyone touched by this rare disease.

Many of you know that the Research Fund for Waldenstrom's, Ltd. and Arnie's Waldenström'sCancer Fund have been working hand-in-hand for several months. WCF generously supported our sponsorship of the Banff conference, and we not only have distributed WCF grant applications, but have joined with WCF in providing the new grant to Dr. Surinder Sahota, Senior Research Fellow at Southampton University Hospitals in the United Kingdom.

Moreover, to add importance to that grant and the two grants being awarded separately by the RFW, we have designated each of the three awards as a "Smokler Research Grant." It is our tribute to Arnie as the founder of everything we collectively are doing to bring about a cure, and it helps insure that he will forever be remembered for his many contributions.

Arnie has asked me to tell you that his organization and the RFW have advanced from a working relationship to a more formal affiliation of across-the-board cooperation on all aspects of our work with WM. The affiliation includes the use of Arnie's listserve as the channel of electronic communications for the RFW, and RFW assistance to him in the production of newsletters and other materials for WCF. Arnie also is handling patient counseling for all of us, and I might add, despite his many health problems, is quite receptive to calls seeking his advice.
RFW's focus is on research to bring about a cure, and we intend to keep it that way, with many thanks to Arnie for providing support with collateral activities of interest to all of us.

RFW was the first organization to commit to sponsorship of the Athens conference, is the exclusive sponsor of the Lugano conference in 2002, and also has committed to be the lead sponsor of the 2nd International Workshop on WM, in Salamanca, Spain in 2003. Arnie and WCF will have a presence with us at all three.

This is an important step forward in the unification of our efforts, and we invite everyone touched by WM to join us both financially and philosophically in putting an end to this disease.

Our unified program also includes an RFW website, with information on WCF soon to be added. The website is up and running, thanks largely to Bob Bailey and Renee Paley Bain. We have some information on the website for you, and Renee, our resident expert, has offered to answer your questions about this after tonight's meeting and during tomorrow's breaks.

I also should point out that we have developed a relationship with the International Myeloma Foundation. As you know, there is a commonality of interest among those involved with the sister diseases of Myeloma and Waldenstrom's. The Myeloma Foundation conducts a number of weekend conferences around the country, and is working with us to include some content of specific interest to those with WM in their Saturday afternoon sessions. Our intent is for those limited sessions to be offered to Waldenström's patients in cities such as Washington, Miami, Atlanta and others that are on the drawing board for 2002. We hope to provide you with further information early next year.

One final point that is important to understand: We now are operating two RFW organizations, one at Dana Farber Cancer Institute which is tax-exempt under the Dana Farber 501 (3) (c) designation, and one that is a separate New York corporation, also tax-exempt under a federal 501 (3) (c) designation.

Until recently we funded only the Dana Farber fund, which we plan to continue with our current executive committee and our programs of special fund-raising events. It is through that fund that we sponsored the Banff and Boston conferences and the two research grants for which Dr. Treon was the principal investigator. However, monies provided to the Dana Farber fund may be put to work only for conferences and research projects in which Dr. Treon and/or his Dana Farber colleagues are key participants.

The true value of our work includes broad dissemination of information and the ability to participate in research projects wherever they may be, anyplace in the U.S. and abroad. The only way to do that was to incorporate independently and to establish a separate tax-exempt identity with an independent board of directors, most of whom also serve on the Dana Farber fund's executive committee. The activities of the two funds are entirely compatible - - they will be working together with a common purpose.

While this may seem confusing, we now are more effective than ever, with continuing dedication to Dana Farber and Dr. Treon, as well as the new-found ability to serve the interests of the Waldenström's community on a broader, global basis. We have sacrificed nothing, and now can respond quickly and more effectively wherever the needs may be.
You already have heard about the three new research grants made possible through our new, independent tax-exempt organization, and you're sitting at a conference made possible through the Dana Farber fund that Anne initiated in 1999.

You'll be hearing more about our plans in the near future - - but meanwhile don't hesitate to get in touch with us with your comments and questions.

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