The National Familial Pancreas Tumor Registry (NFPTR) was established at The Johns Hopkins Hospital on January 1, 1994. It is a research study aimed at identifying the causes of pancreatic cancer. This organization is something my dad and I looked into after my mom passed. So what can I do? Well, because both my mother and my great-grandmother had the disease, that leaves a family line of the disease. This is the main purpose of the NFPTR; to use family medical history in order to attempt to find the gene that is linked with familial pancreatic cancer.
So here I sit, with a large packet of papers that are asking me every question possible about my mom's side of the family. It's a long list, but I am more than willing to fill it out. The problem is, my mom's mom, who I call Nana, is 92. Her mind is great, but trying to have her recall how her siblings died and when and what age they were, is a lot on her. So I will be turning to my uncle to help me answer the rest of the questions that I cannot find the answers to.
I encourage you, if you have multiple family members who have the disease or have passed away from the disease, or even if you just want to learn more, to check out the NFPTR website. It has so much information on it. If you have family members who have or have passed away from the disease, write to the NFPTR. I encourage you to join. Take some time out of your busy schedule. I know everyone has a million things to do, but this is important. You can learn a lot about your family you may not know, and you may even help add that last piece it takes to find that gene and find a cure.
I'm taking the time to try and make a difference. How about you?
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