Did you know?

The IWMF raised more than five million dollars for WM medical research

Did you know?

The IWMF raised more than 60 support groups in North America and nearly 20 others world-wide

Did you know?

The IWMF has a current worldwide membership of nearly 4,000

Did you know?

IWMF-TALK is a wonderful place to share information and learn from other survivors

Did you know?

Each year 1,500 new cases of Waldenstrom's macroglobulinemia are diagnosed in the USA

Did you know?

Volunteers at the IWMF Telephone Lifeline are waiting to share their experiences with you

Did you know?

You can order DVD recordings of past WM Educational Forums online or by mail

Did you know?

All IWMF programs and services are funded by WM survivors, caregivers, friends, and family

Advocacy

Some IWMF members have indicated an interest in advocacy work. We can assist you by recommending that you register with two cancer organizations: the Lymphoma Research Foundation (LRF) and the Leukemia & Lymphoma Society (LLS). Both organizations are much larger than the IWMF, each having paid staff numbering more than 150.  Both organizations cooperate with the IWMF.

 

These organizations have advocacy departments with staff who work in the Washington, D.C., setting and monitor current legislation needing support from cancer patients in the House of Representatives and Senate. The lobbying efforts of the LRF and the LLS are not specific to WM; their interests are broader and cover all lymphomas (LRF) or all blood cancers (LLS).

 

We suggest that you register with one or both of these groups as an advocacy volunteer. LRF and LLS will send e-mails to you as an advocacy volunteer to inform you of legislation needing support and to suggest language you should include in your personal letter to your Congressional representatives.  Contact information for both organizations follows.

 

Go to LRF’s website at www.lymphoma.org

 

From their Home Page, look for their Advocacy section, left column. There you will find their Action Center and Public Policy & Advocacy News that will give you specific information on how to help in lobbying for lymphoma with the National Cancer Institute, the Congress of the United States, and the Department of Defense (the Department of Defense receives federal funds for medical research). To be active with the LRF advocacy campaign, you must register. To do so, go to Advocacy Tool Kit to register online. You will receive alerts about legislation. Training materials are also available.

 

Go to LLS’s website at www.lls.org

 

From their Home Page look for their Advocacy section, left column, bottom. The LLS Advocacy program provides alerts at the federal and state levels on all blood cancer legislation for which they hope patients will lobby. You can find your state on this website together with a list of legislators. Their federal alerts are always up to date. Under Resources they have a Tool Box for Advocates, and under My Advocacy Profile you can register with the LLS to receive alerts.