Monday, May 13, 2013

We've Got Some Great Cheeks in Gwinnett County!

252 and Counting!

That's how many living angels came to Peachtree Ridge High School last Friday and joined the National Bone Marrow Donor Registry.

Libbi, Dave, Marina, Robert at the close of the drive
Our dear friends and neighbors, Libbi and David Wengryn, asked our kids' high school officials if we could hold a Bone Marrow Donor Registry drive on the campus. 

May is a hectic month for high schools ~ AP exams, Final exams, Seniors Graduation, the spring musical, athletic competitions, and thousands of details of which I'm pleasantly ignorant.

And yet, Dr. Kevin Tashlein (our Principal) and the entire administration and faculty gave us a resounding, "Yes! Let's Do It!"  Mr. Jon Weyher (the AP for Athletics, Health/PE, Cafeteria, & Clinic) ensured we had use of a gym and opportunities to promote the event to students the week of the drive.  

We worked with DKMS Delete Blood Cancer and our local donor recruiter, Kimberly, trained our incredible volunteers and made sure the event went smoothly. 

Two Peeds Join the Registry

Alex & pals photo-bomb Robert's swab shot.
My husband, Robert, joined the registry.  "I would have done this years ago if I knew then what I know now," he said between swabs.

Our daughter, Katrina, is 18 years old and she also joined the registry. She will graduate from high school in 2 weeks. 
"I hope I get the call some day so I can save someone's life," Katrina told me as she showed me her donor registry card. 

Katrina studied the educational videos on bone marrow/ blood stem cell transplantation and worked hard to educate her peers on the importance and ease of joining the registry. She used Facebook to create an 'event' and invited hundreds of people. 
Some of her teachers had her speak to their classes about the Bone Marrow Donor Registry and what's involved for donors. 
The most common question kids asked her about donating is, "Does it hurt?" 
When she describes the two methods of transplant and types of discomfort for each, she adds, "It's nothing compared to the pain my mom has lived for years." 

DNA from Around the World Urgently Needed

Because ethnicity and heritage influence our HLA composition, race/ethnicity matters when it comes to finding a life saving donor match. 

It really is a numbers game. The more people who join the registry, the higher likelihood a leukemia patient will find a donor and survive. 

I found varying statistics on websites that stated likelihood of finding a match based on race and ethnicity. Rather than claiming specific percentages here, it is clear that Caucasian (white) leukemia and lymphoma patients have SIGNIFICANTLY higher likelihood of finding a match from the donor registry than non-white patients. 

People of African, Asian (including South Asian), Native Hawaiian or other Pacific Islander, Hispanic/Latino, Native American, and Alaska Native descent have far less chance of finding a matching donor.  

Why is there a large difference?
One reason is because there are more HLA combinations in the genetic composition of descendants from continents other than Europe. Another reason is because there are far fewer people of color in the donor registry.   

I've learned that there are several reasons why people don't join the registry. Most people lack awareness of the need. Many don't trust how 'the system' will treat and use their DNA. Recent research is illuminating. 

Let's Be the Change

I figured our kids' school was a a great place to launch our education & donor registry efforts. Our student body is quite multi-cultural ~ check out my kids' Junior-Senior Prom group.

These healthy, bright 17 and 18 year olds are inspiring. Their world views are more expansive than their parents' and grand parents' generations. They restore my optimism in humanity's future (particularly in light of how we 'grown-ups' continue to poison and neglect our ecosystem). 

I was overwhelmed by the outpouring of concern and well-wishes during the drive. 

Members of the Senior class, faculty, and administration dropped in to swab and join the registry. Some students who are not yet 18 helped to recruit those of age to come in and register.  

Coach Hellman, the Varsity Boys Tennis Coach swabs in

Gotta love these healthy, athletic stem cells! Thanks, guys!

Friends, neighbors, parents of my friends' kids, and people I worked with in various community endeavors also came to the school to get swabbed. 

Some who are over the age of 55 dropped in to let me know they would donate if they could (none pictured here, unfortunately).

My friend Kimberly Cho encouraged many people from her church to come and join the registry.

Here are a few more photos from the day.

I am grateful to the friends who came out to run the drive.
Sareena, Joella, and Lindsay are
Great Volunteers & Potential Donors
More healthy stem cells!

Thank you for signing our board after joining the registry!


Dr. Tashlein joins the registry!
Ana, Aliya, & Lindsey registered &
helped during the drive.

I have amazingly caring & supportive friends ~
here with Sara, Madison, & Eva Orazi with Libbi Wengryn.
I just LOVE all my kids. Here with Harrison,
Christina, Kevin, and Alexander.

Alexander & Katrina are all smiles at the
end of a successful donor registry drive.

Mr. Feldman, Director of the Theatre Department
presents $425 to Delete Blood Cancer
through donations raised by patrons after each show
of Legally Blonde, the Musical.
Kimberly Duncan of DKMS Delete Blood Cancer and I are
all smiles after a successful drive.

Wednesday, May 08, 2013

Family Recruits More Life Savers

   My extended family lives the maxim "One for All and All for One!" ("Unus pro omnibus, omnes pro uno" for my Latin linguist friends)

   When word got out that "Big Marina needs a blood stem cell transplant and none of her siblings are a match" everyone got busy. (In case you're wondering, "Big Marina" refers to me as the eldest of two first cousins named after our Yia-yia, our Greek grandmother. I am also physically larger than my talented and beautiful cousin, "Little Marina")

   Cousins, in-laws, out-laws, and friends have joined the Bone Marrow Donor registry in hopes of being my match ~ at donor drives in their communities and by ordering a kit online. These great people are prepared to donate their bone marrow/stem cells to anyone in need. 

Our Race to Beat the Odds
With more than 4,000 characteristics of HLA types, there are literally millions of potential combinations. The odds of finding a full genetic twin are staggeringly small. Transplant doctors look for 10 matching HLA types of donor and patient. Only 1 in 540 donors in the registry end up donating their bone marrow/stem cells. It's no wonder that 3,000 children and adults die each year waiting for a match.

Race and ethnic heritage (in terms of genetic history, not man-made political jurisdictions) influence these combinations. I'm still learning that my genetic ancestors are more diverse than Greek, Irish, French, and German. (The info from the DNA I sent to 23andMe continues to grow.)

WIth all this in mind, it is in everyone's best interest to increase the number of donors in the registry. My 'Matched Unrelated Donor' (MUD) is likely to register through a donor drive run somewhere else. 

Since we are a goal-oriented people, we hope that the donor drives done on my behalf result in at least 1,080 new donors; a life saver for me and another could be in the mix. All it takes is a cheek swab. Can it be any easier to pay it forward?

My Family Diaspora Swabs the US
In two months time, family and friends will complete five bone marrow donor drives across the country.

My mom, Eileen, with sign created by Thea Nini & Little Marina
Houston, Texas
My Thea Nini (Aunt Elaine) Sampanes Badoian orchestrated a Bone Marrow Donor Registration drive at the Greek Orthodox Church in Houston, Texas in April. She worked with Be the Match.

Tempe, Arizona
Mtn Pointe HS in Tempe, AZ ran a great drive!
Donna Barry Sampanes, my sister-in-law, organized a donor drive at Mountain Pointe High School in Tempe, Arizona two weeks ago. Donna is doing a follow up this weekend! She also worked with Be the Match.  

Suwanee, Georgia
My neighbors and dear friends, Libbi and Dave Wengryn, organized a drive to register donors at our kids' high school ~ Peachtree Ridge High School in Suwanee, Georgia. Katrina is making posters, Alex is distributing information and the Peed and Wengryn kids are recruiting donors and will assist during the drive. The drive is this Friday, May 10th from 10 am - 3 pm.

Marietta, Georgia
My cousin Christina and her parents (Ted and Linda Sampanes) are organizing a donor drive at the Greek Orthodox Church in Marietta, Georgia later this month (also with Be the Match).

Grand Rapids, Michigan
The home church for our Sampanes family is Holy Trinity Greek Orthodox Church in Grand Rapids, Michigan. Family friends are organizing a donor drive on my behalf.

Waterford & Milwaukee, Wisconsin
My amazing nephew and godson, Patrick Goldammer, is going to run a big donor registration drive as his Eagle project with the Boy Scouts. It's a big task for a 12 year old! Stay tuned for more information.