English - International Waldenstrom's Macroglobulinemia Foundation

PRESIDENT’S CORNER
Thank goodness it’s spring!
Like the flowers that will
soon be popping up around
here in Philadelphia,
the IWMF has plenty of
exciting new developments
popping up and worth
celebrating:
• The FDA’s decision
to grant Breakthrough
Therapy Designation for
the investigational agent
ibrutinib as treatment for WM and for relapsed or refractory
mantle cell lymphoma (MCL). The participation of your
fellow WMers in clinical trials played a crucial role in
this important advancement in the development of therapy
for WM. To learn more about this major advance, see the
summaries of the most recent research reports on ibrutinib in
Medical News Roundup on page 8. The IWMF press release
on page 6 announces that Waldenstrom’s macroglobulinemia
is one of two cancers approved for ibrutinib by the FDA’s
designation of Breakthrough status for this drug.
• The IWMF Educational Forum in San Diego from May
17-19. If you haven’t registered, there’s still time. Come
hear the latest developments in WM including ibrutinib, all
focused around our theme of Imagine a Cure.
• The availability of downloadable materials from the
IWMF website. Do you need a copy of Waldenstrom’s
Macroglobulinemia: Treatment Options or Waldenstrom’s
Macroglobulinemia: Questions & Answers or other IWMF
materials? Just go to our website (iwmf.com/publications/),
enter your information, and you’ll have what you need in
seconds. This is a great way to get what you need while
saving the IWMF the cost of printing and mailing. However,
if you prefer a hard copy, we’ll mail it to you.
• The news that Tom Myers and the IWMF Research
Committee worked with our Canadian colleagues at the
Waldenstrom’s Macroglobulinemia Foundation Canada
(WMFC) and the Leukemia & Lymphoma Society to fully
fund a new research project on mouse modeling with the
MYD88 gene mutation from Dr. Ruben Carrasco of the Dana-
Farber Cancer Institute. A great job in stretching our limited
resources! And special thanks go to Arlene Hinchcliffe,
President of WMFC, and the Canadian WMers!
• A new Member Services Matching Gifts program which
enables you to double the impact of your giving from now
until May 15. See page 11 of this issue or our website at iwmf.
com/docs/documents/2013_Matching_Gift_Program_Letter.
pdf for more information.
Would you like to make a unique gift for Mother’s Day
or Father’s Day? Consider a Tribute gift. The amount you
give will be doubled under the Matching Gifts program, the
recipient will receive a letter from the IWMF acknowledging
your donation, and the recipient’s name will be printed in the
next issue of the Torch.
• An increasing number of WMers are finding creative and
fun ways to give to the IWMF, as reported on page 17.
Doesn’t this article give you some great ideas?
You’ve heard us say that the IWMF is volunteer-led and
volunteer-funded. What does that mean? From the perspective
of “hours spent on IWMF business,” our office in Sarasota
has a staff of 4––1 full-time and 3 part-time employees––who
collectively put in about 5300 hours a year, the equivalent of
2 1/2 employees full time. (And the great service we get is a
very efficient return for 5300 paid hours!)
We decided we wanted to know how many volunteer hours
we received. We estimated the number of hours that IWMF
Board members, support group leaders, Lifeline volunteers,
the Torch staff, and committee members (Publications,
Research, Fundraising, Information Technology) put in and
came up with a total of 22,500 hours––the equivalent of 10.8
full time people. Or, put another way, we have over 4 times as
many volunteer hours as paid hours. Now, that’s volunteerled!
Thank you to everyone who tirelessly gives his or her
time to the IWMF. Just think what we could do with 50,000
volunteer hours!
You, too, can support the IWMF by volunteering. Each
and every WMer is critical to our success in conquering this
disease. With a rare disease like WM, every person counts—
especially you! How can you put your talents to work to help
conquer WM?
Could you volunteer your time and skills to the IWMF? Ask
your support group leader how you can help or call the IWMF
office in Sarasota and tell us about your skills. We particularly
President's Corner cont. on page 6
IWMF TORCH Volume 14.2
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