When we attended the local WM support meeting, we learned that there are several studies in the US which are pursuing information regarding the genetic transfer of WM. Only about 1500 people per year are diagnosed with it in the US, compared to about 230,000 cases of breast cancer. Yet, my dad and I share the disease. Apparently there is a genetic component.
I volunteered for two of the studies: The Bing Center for WM at Harvard and the National Cancer Institute at NIH. The Harvard study hopes to uncover the difference between familial WM and non-familial WM and to discover what genetic traits put you at risk for WM. The NIH study hopes to determine if familial WM is caused by inherited susceptibility or shared environmental exposures and thereby find clues to the causes of WM in all patients.
In both cases, the researchers put a lot of thought and effort into making the process easier for the volunteer. There were long surveys (one of them was 14 pages) with family trees and questions about demographics and personal history. Medical records were transferred and blood samples (12 tubes per study) were provided and shipped off. Expedited shipping and cold packs that were frozen ahead of time kept the samples viable. They provided all the shipping supplies, postage and even made the appointments for the lab work-all at their expense. The researchers are very kind and compassionate and always available by phone or email for questions. I was very impressed with both their friendliness and professionalism.
NIH was also interested in my family members, so my husband, father, mother and brother volunteered as well. It is extremely rare to have a WM patient with both parents still living. They felt that our family is in a position to offer unique insights into the genetics of the disease. You may wonder why my husband was involved; they also want samples from our daughters. By comparing the DNA of those of us who have WM and those of us who do not, they are able to fill in a lot of blanks.
All of this may sound like a lot of trouble but when compared to traveling to the lab to be questioned, poked and shuffled around it was a piece of cake. Basically, I filled out a survey, had a blood draw and dropped a package at Fed Ex. My hope, and the hope of my family members who volunteered, was to contribute in some small way to the knowledge of this disease and, someday, a cure. I am particularly eager to help if I can, since the type of WM I have is apparently inherited and I have two daughters and now three grandchildren.
I'm glad to have these intrepid explorers on my side.
Scripture reference: 2 Corinthians 1:9-10; 2 Thessalonians 2:16-17