BY JENNY AHLSTROM My friend Richard was recently diagnosed with multiple myeloma and entered his stem cell transplant about three weeks ago. Now that he is mid-transplant, he wondered how I could have possibly done two. When I shared that I believed patients could help find and fund their own cure and described the Myeloma Crowd Research Initiative, he sat back a little stunned. "Nobody does this. No one thinks they can cure their own disease, do they? Most people just sit and wait for someone else to do it for them." I could see a light turning on inside of him. He was struggling that day with nausea and depression, still in shock that he had gone from an active, healthy man in his early 40s to a weak, chemo-pummeled sick person. He wondered if he would ever fell back to "normal." He said,
"All of my friends want to do something for me. They bring me dinner and endless plates of cookies, but what I really need is a cure."
By the end of our conversation, the wheels were turning and he was brainstorming about how he could help with the MCRI. In just a few minutes, he had shifted from someone who was being acted upon to someone who was choosing to act to determine his own destiny. We have all been where Richard is and we all have family and friends who rally around us, wanting us to continue living. Now there is something specific they can do to help. You can create a donation page and invite your family and friends to help fund new and exciting research that dramatically shifts care for YOU. Especially for those with high-risk multiple myeloma, this is a way patients can help save themselves and extend their lives. HOW TO CREATE AN MCRI PAGE To create a page, just click here. It's easy and self-explanatory! Thanks to the many patients who have already created a page like Jo Ann McNeil, Victor Thuronyi, Lizzy Smith, Gary Petersen, Pat Killingsworth, and others! Your family and friends may wonder where their donation is going. We completed an exhaustive process with the help of top myeloma specialists to find and select the very best two research projects for high-risk myeloma patients. The best part about them is that these new therapies are equally exciting for low or standard risk patients. All of the proceeds will go to these very specific projects, so donors will know exactly where their donation is going. To learn more about our process and the two projects, click here. Watch for our next post on a sample email you can send to your friends and family as an invitation to help make a real difference for your outcomes.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.