Sunday, June 02, 2013

Beating the Odds Starts with a Swab

When I began this journey 3 months ago, I was pretty confident that one of my four siblings would be my match (a 10 for 10 match of HLA-types; it's not about matching blood type).  Each had a 25% chance, so wouldn't 1 of the 4 have to match?   That's not how probabilities work, I learned. 

I figured the Northern European ancestry on my mom's side would ensure several potential donors. Apparently our Greek ancestry is a bit more diverse than we thought.  

My family and friends immediately jumped on my challenge, determined to find me a donor. They have already run nine (9) Bone Marrow Donor registry drives ~ in Houston, Tempe, Grand Rapids, and four here in Georgia.

My mom even brought donor registry kits to her retirement party yesterday in Dallas ~ I believe she swabbed 32 new willing donors! 

556 new healthy people have joined the 

National Marrow Donor Registry 

because of these efforts!

Need for Marrow Donor Goes 'Viral'

My plight has hit social media!  While I've been public about my journey, I struggle with asking for help for myself ~ especially from perfect strangers.  

Friends convinced me that a Facebook page would help promote awareness and organize volunteers. I've seen similar pages (Genny's Hope Foundation and Help Nalini Now) that share a common goal:  to increase the number and diversity of healthy people registered to be bone marrow/blood stem cell donors. 

So now we have "Marina Needs Us" to promote the marrow donor drives and blood drives that are organized in my honor across the country. We'll see how helpful it is and how it changes organically as conditions change.

Donor drives have been done in partnership with AHEPA, Be the Match, and DKMS Delete Blood Cancer.  All the donor information feeds into the National Marrow Donor Program. 

Some use SignUpGenius, a free on-line volunteer organization site for community organizations to post volunteer opportunities. We learn as we go.

Goal #1:   Register 1,080 New Potential Donors 

Since I always work best with a goal, I set my sights on adding 1,080 donors to the registry. Why 1,080?  Because 1 in 540 people on the registry end up donating their blood stem cells to a patient like me, I'd like to pay it forward to cover a matching donor for me and one more patient. 

I continue to be humbled when I see neighbors, friends, friends of friends, and parents & siblings of my kids' friends volunteering to work these donor drives, get swabbed, and talk it up in support of our efforts to increase the donor pool.  

Helpful hint:  students can earn volunteer / community service hours for their assistance with these efforts.

Goal #2:    Dispel the Myths

I readily admit that I didn't know anything about bone marrow transplants until I met people with various MPNs (myeloproliferative neoplasms) that progressed to burn-out the bone marrow. 
What's worse that no information?  BAD information!

A Friend In Deed for a Friend In Need
None of this happens in a vacuum, and I certainly have not done much to make these drives happen.
Lynn Agnes, fearless friend
I must take a moment to openly thank Lynn Agnes for taking on this challenge of finding my match. We haven't seen each other in quite some time, yet Lynn showed up to help with our big drive at Peachtree Ridge High School on May 10th. Lynn researched my illness, the transplant process, and how marrow donor matching is done. During the drive at my kids' high school, she began brainstorming and calling people to schedule more drives.

Lynn secured several drive locations in a matter of days:  Gwinnett Chamber of Commerce, TPC Sugarloaf Country Club, Gwinnett Medical Center, Gwinnett Technical College, downtown Duluth (Georgia), and the Annunciation Greek Orthodox Church in Atlanta.  And she has more activities in the works. 

Lynn inspires me and my family with her bold tenacity. She is teaching my kids how to take action when there is an urgent need.  We know that her efforts will save lives.
Thank you, Lynn!

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