Day 12 of Myeloma Giving: From December 10 – 31, the Myeloma Crowd is sharing 12 Days of Myeloma Giving. Please share this post and invite your friends and family to participate. Each day we will share something you can give to lift others. These gifts will save lives, lengthen lives and makes lives happier and more meaningful – maybe even your own.
Between today and this time next year at least 30,770 Americans will have their lives changed forever when they get diagnosed with myeloma—a cancer virtually all of them never heard of before.
They don’t know what they will be up against, but we do. We know they, their families and friends will have to become fluent in a language they never thought of or wanted to learn. They will have to make plans around the schedule of the most unwelcome intruder in their lives.
We understand their confusion, bewilderment and worst fears. We understand why they may think the futures they planned suddenly seem out of reach. We also understand many of the challenges ahead of them.
We know that myeloma is not always a death sentence. But the fear lurks, it’s just a matter of when it reveals itself.
We know that being diagnosed today means you have more options than those diagnosed yesterday. We know that those diagnosed tomorrow have the best outlook myeloma patients have ever had.
The most important thing we have to understand in our new normal is the value of reaching out a hand to those who need help, comfort and advice. And we can’t be afraid to reach for the many hands—from doctors, nurses, and social workers; from loved ones; from fellow patients and caregivers; from each other—that are willing to be there for us.
In the time I’ve been a part of the myeloma community, I never cease to be amazed by how many outstretched hands are there for us.
That’s how I think of the Myeloma Crowd. It’s not everything for everybody. It doesn’t have all the answers. It’s a network of helping hands that conveys and offers tools and information to help yourselves.
Founder Jenny Ahlstrom’s philosophy from the beginning has been made up of collaboration, dialogue, and community.
As we enter this New Year, we hope you will take advantage of all Myeloma Crowd programs, use them for your purposes, and connect with each other.
Create and update your own HealthTree profile. Use it as a valuable tool to have more informed discussions with your physicians. Share your experiences to help not just yourself, but patients everywhere.
If your inclination is to reach out, consider becoming a Myeloma Coach with a new website coming soon. Or if you are African American, attend our Myeloma Meetups in 2019.
Take some time to peruse and listen to any of the more than 120 Myeloma Crowd Radio programs to deepen your knowledge about topics in myeloma research and treatment that interest you.
Join us at a future Myeloma Crowd Round Table to deepen your understanding of myeloma with some of the top clinicians and researchers in the world.
Should you want to support research with a donation, think about contributing to crowdfunding of the Myeloma Crowd Research Initiative. We let you know exactly what you will be funding, not just with the hope and expectation that we will spend it well. And it's likely to be the only donation you'll give this year where 100% of it will be donated to research.
Of course, make checking in with the Myeloma Crowd website, Facebook, or Twitter part of your regular routine to keep up to date with our work and contact us when you have suggestions about how we can do things better to serve the myeloma community.
And don’t forget about the 30,770 who don’t yet realize how many outstretched hands await them.
Let’s resolve to be there for them when they need us.
about the author
Greg Brozeit has been engaged in myeloma patient advocacy since 1998. He began working with the Myeloma Crowd in 2015. Prior to that, he consulted with Dr. Bart Barlogie at the University of Arkansas after working with the International Myeloma Foundation for 15 years, where he inaugurated the public policy advocacy program, patient support group outreach and IMF Europe, organizing more than 100 physician and patient education programs. He earned his BA in political science from Loyola University in New Orleans and lives in northeast Ohio.