Click on the image to view a video of Peter DeNardis, IWMF Board Member, as he explains how the Foundation helps everyone affected by WM.
Share Your Story
Sharing your story with us is a fantastic way for you to help others who are traveling down the same path that you are --- whether you are a patient, caregiver, or family member--- we would love to hear from you.
Patients and others who visit our website often tell us that one of their favorite features of our communications are the stories of the lives of people who are affected by WM. We would very much enjoy learning about you, your story, and how your experiences can motivate, help and inspire others we serve.
Reach out to others for support. The IWMF Support Groups are the perfect place to talk with other people affected by WM, including patients, family members and caregivers. The groups provide mutual support and offer the opportunity to discuss concerns with others who share experiences with each other. This sharing strengthens the family bond and enhances everyone's ability to cope with WM. Not only are Support Groups a good source of information about WM from others who are living with the disease…but you’ll make new friends!
A diagnosis of blood cancer dramatically affects the lives of families and all others who have a relationship with the patient. The patient and the entire family may experience an emotional, physical and, possibly, financial impact. Both patient and caregiver usually need to rearrange daily activities to some degree - changes that may not come easily.
Cancer is an expensive illness, and it is often a challenge to keep up with the additional costs you may experience after being diagnosed. The Leukemia and Lymphoma Society (LLS) publication Cancer and Your Finances provides guidance about health insurance, government programs and financial assistance programs. It also provides information about the US Affordable Care Act (ACA).
For many cancers early detection and treatment are important to one’s survival. However, WM often offers patients the luxury of time – time to find a local board certified hematologist-oncologist who can provide your on-going care; and if need be, time to get a consultation, as a second opinion, with an hematologist-oncologist who is an expert on WM.
One of the very best parts of the IWMF is our members and the support they share. We gather and support each other at our annual Educational Forum and other periodic educational meetings held by the IWMF and/or our International Affiliates. And, Support Group meetings, whether in the US or those of our International Affiliates, provide a more frequent opportunity for members to meet, share information, compare experiences and provide mutual encouragement.
The IWMF sponsors a friendly Internet-based group discussion forum in English called IWMF Connect, where you can communicate with others, share experiences and insights, exchange information and get emotional support. The discussions typically focus on WM diagnosis, treatments, research, prognosis, side effects and related conditions. In addition, other important information is conveyed about patient advocacy, outreach to doctors, concerns of the newly diagnosed, information about IWMF’s research and educational activities.
Becoming knowledgeable about WM, treatment options and coping mechanisms are key for your wellbeing as a patient with a very rare cancer. The IWMF offers an annual Educational Forum and makes available publications and other information to help you and your caregivers become knowledgeable about your disease. Our education strategy consists of: