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Ed Forum 2017

Happy Holidays! IWMF Board Chair Reflects on 2019 Highlights

Dec 20, 2019

As 2019 comes to an end, I thought you might want to see just a few of the highlights of what the IWMF accomplished for you in 2019:

NEW STRATEGIC PLAN for 2020 and Beyond
We created and adopted a new Strategic Plan with a compelling vision and mission, along with focused objectives to accomplish them:

  • IWMF Vision: A World without WM (Waldenstrom’s macroglobulinemia).
  • IWMF Mission: Support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) while advancing the search for a cure.

FUNDED NEW RESEARCH PROJECTS and Enhanced IWMF Research Processes
​We invested another $1,200,000 in research in our search for a cure. This brings our total spending on research to over $16 million since 1999 on over 48 projects, all financed by fellow WMers and their friends and family. We strengthened our research capabilities by adding three new doctors to our Scientific Advisory Committee (SAC):

  • Dr. Zachary Hunter from Dana Farber Cancer Institute (DFCI)
  • Dr. Christian Buske from Germany
  • Dr. Monique Minnema from the Netherlands

The IWMF SAC will be co-chaired in 2020 and beyond by Dr. Stephen Ansell of The Mayo Clinic and Dr. Steven Treon of DFCI. We also issued a new RFP for research proposals that are focused on the IWMF-LLS Research Roadmap to seek out new information regarding WM in the areas of signaling, immunotherapy, tumor microenvironment, and “omics”.

ANNUAL IWMF EDUCATIONAL FORUM

  • Each year, the Ed Forum Committee works diligently to fine tune the agenda to capitalize on the latest treatment and research developments for WM, and to cater to previously unmet educational and support needs of patients and caregivers.
  • We had an enormously successful IWMF Educational Forum in Philadelphia, with 350 attendees and an overall rating of 4.83 out of 5. Or putting it on a 100-point scale, we got an A+ with a rating of 97!
  • We had our first ever live-stream of an Ed Forum presentation, so that WMer’s around the world could share the experience remotely.

SUPPORT GROUP AND INTERNATIONAL AFFILIATE EXPANSION
We continue to work towards ensuring that information and support is provided at a local, personal level by establishing and maintaining support groups in the U.S. and facilitating the establishment and ongoing activity of international affiliates around the world

  • We added 4 new support groups this year in the U.S. (NM, WA, FL, TX) and more are on their way.
  • Our international affiliates also added new support groups, bringing our worldwide total to over 65 support groups. We currently have 18 international affiliates in 21 countries on 5 continents. Stay tuned in early 2020 as we expect to add more affiliates soon. 

ENHANCED PARTNERSHIPS with LLS and other organizations for education, research and support

  • We partnered with LLS for U.S. Support Group Leader and Lifeline Volunteer training to better serve the WM community.
  • ​We continued our efforts to fund WM-specific research guided by the IWMF-LLS Research Roadmap initiative, where top research minds from around the world get together to lay out the critical basic science research areas that will lead to better treatments and a cure for WM
  • ​We strengthened our partnerships including:
    Increasing the co-pay level to $7,500 in the LLS Co-Pay Assistance Program
    Introducing a partnership with StopAfib.org to help WMers concerned with Atrial fibrillation (Afib)
    Partnering with PALS (Patient Airlift Services), a non-profit organization that helps those who cannot afford, or who are unable, to fly commercially
    Partnering with LRF (Lymphoma Research Foundation) and CLF (Cutaneous Lymphoma Foundation) to win an Innovation award from Celgene for a Lymphoma Learning Lab to enhance the skills of our employees
    Partnering with the LLS Clinical Trial Support Center to help WMers identify the best clinical trial to enroll in.

PUBLICATIONS written and issued this year

  • Fact sheet on IVIG, Human Intravenous Immunoglobulin Therapy
  • Fact sheet on Venetoclax
  • About the IWMF brochure. A copy will be included in the January IWMF Torch. Be sure to share your copy with your friends, family and doctor.

GOOD STEWARDS of Donated Funds
We increased our four-star rating by Charity Navigator (the largest rater of non-profits) to 95.29, with perfect rating of 100% on transparency and accountability. This means you can give with confidence.

EDUCATION OFFERINGS for WM Patients, Caregivers, and Medical Professionals

  • We started our first CME (Continuing Medical Education) course with PleXus Communications to teach doctors and other health care professionals about WM.
  • We partnered with CancerCare on another successful webinar featuring Dr. Ansell from Mayo and Dr. Castillo from DFCI.
    -CancerCare does webinars on many diseases that involve many more patients than WM, including breast cancer, prostate cancer, lung cancer etc. However, by far the largest attendance of CancerCare webinars is associated with their WM webinar offerings. This is true for both the live attendance and the number of people who listen to the podcasts after the event. The WM community is an amazing community.

All the items above would not have been possible were it not for the tireless efforts of the IWMF Board of Trustees, the IWMF staff in Sarasota, FL, Support Group and International Affiliate Leaders, the SAC members, and volunteers who tend to things ranging from writing publications, copy-editing news and other documents, and assisting with Ed Forum activities. Special mention should also be made of the time and energy expended by clinicians, medical staff, and researchers who devote their time to treating patients with WM, conducting research studies focused on our disease, and educating others about WM.

Of course, member services and research activities just wouldn’t happen were it not for the generosity of donors – and, on behalf of the IWMF worldwide community of patients and caregivers, we are deeply grateful for their monetary support. 

If you’ve donated in 2019, we thank you! If you haven’t yet, there’s still time before the end of the year to do so. Any amount, large or small, will help ensure that the IWMF can continue to make real progress in 2020 against both our vision of A World without WM and our mission to Support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) while advancing the search for a cure. Please make as generous a donation as you can. Rest assured, we’ll use it wisely.

Working together, patients, caregivers, IWMF Board Members, IWMF staff, volunteers, and donors, will bring us closer to finding better treatments and ultimately, a cure for WM. Our collective efforts will help improve the quality of life for patients and caregivers in 2020 and for many, many years beyond that. Click here to read more about the many different ways you can give.

Happy Holidays!

 

Carl Harrington
IWMF Chair of the Board

 

*P.S. Don’t forget to sign up for the CancerCare webinar on January 10th and stay tuned for the announcement of new affiliates and new initiatives in 2020.

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