IAJGS2016Discussion Mailing List: Jewish genealogists swabbing cheeks to save lives (not just to search for ancestors) at IAJGS 2016

[Asparagirl (asparagirl]

Six years ago, at the 2010 IAJGS conference in Los Angeles, I set up a
table in the hallway with some friends and volunteers to try to
convince conference attendees passing by to swab the insides of their
cheeks -- but not for genetic genealogy purposes. Instead, we were
asking people to swab their mouths to join the national bone marrow
registry.

We were working with the non-profit organization Gift of Life, which
focuses specifically on outreach to Jewish events and organizations
(synagogues, day camps, historically Jewish fraternities, etc.) to try
to increase the potential donor pool amongst the Jewish community.  I
figured that a Jewish genealogy convention with 1,000 mostly-Jewish
attendees seemed like a good fit for this kind of outreach, and thus
was born the first IAJGS bone marrow donor drive.

This morning, I received an e-mail from Gift of Life letting me know
that one of the 55 donors we signed up at the 2010 IAJGS conference
has been identified as a genetic match for a 58 year old man suffering
from leukemia!  We do not know any other details about him, nor any
details about the potential donor; participant details are kept
confidential, even from each other.

In case the anonymous genetic match, who joined the registry at the
conference, and who is presumably one of our fellow Jewish
genealogists, might be reading this e-mail right now: THANK YOU!  Your
decision to give us a spit sample six years ago may now save someone's
life.

And if you missed the 2010 conference and you'd like to join the bone
marrow registry yourself, you're going to get another chance.  The
co-chairs of this summer's 2016 IAJGS conference in Seattle have now
given us the tentative okay to our hosting a new bone marrow drive at
this summer's conference.  And thanks to Gift of Life, all the test
kits will be free!

People who want to join the bone marrow registry must be generally in
good health, and -- this part is important, given a genealogy
conference's usual demographics -- over eighteen but under sixty years
old. If you're ineligible to join the registry due to health or age,
we hope you'll consider making a donation directly to Gift of Life
instead, to sponsor the processing costs of someone else's test kit.
And no, you don't have to be Jewish; all test kits' results are also
listed in the national donor registry.  In particular, people who are
wholly or partly Sephardic or Mizrahi or multi-racial are
underrepresented in the database and sorely needed to test.

Joining the bone marrow registry will also give you an unusual genetic
genealogy clue: once you're in their system and they've tested your
sample, you can request that they mail you a copy of your HLA markers.
You can then do look-ups in various specialized public health
databases to find out not only how many people in the national donor
database match your HLA markers at perfect or imperfect match levels,
but also the percentages of the ethnic origins of those marker values
in the general population.  So far, HLA marker testing is not
available to the public even through the usual commercial genetic
genealogy testing companies, and joining the registry is the only way
I know of to get it.

And who knows, maybe next time you'll be the crucial match for someone
who needs help.

If you are going to be in Seattle this summer and you are interested
in helping man the table with me and some other volunteers, even if
you can only be there for an hour or two on one of the days, ***please
e-mail me off-list*** so we can figure out the best times and dates to
ensure continuous coverage at the table for at least two of the
conference days.


- Brooke Schreier Ganz
Mill Valley, California