|
Opening Our
Hearts
ADWOFF's Charity of the
Month
Through the past two
months, great cyber-friendships have developed
between members of our Noraholics' family (club
seems too impersonal). One lady and her talents
have brought us together; the rest has been up to
ourselves.
We are a diverse group ...
and despite our zaniness that we display on the
boards, deep inside, we have a great empathy for
our world. But one young lady stands out. Jenn (aka
Jenn4Cubs) has a heart that is wider than the
United States and deeper than the Grand Canyon. She
is passionate about helping others. Here is one of
her stories/one of her passions ...
HLA ... Ryan's Story
by
Jenn (aka
Jenn4Cubs)
When I was a junior in
high school, I saw a picture of a little boy named
Ryan on a flier that was posted on campus. He
needed a bone marrow transplant before his second
birthday if he was to have a chance at life. Ryan
was over a year old when I met him. One look at his
sweet face, and I knew I would do anything I could
to help him. I learned shortly after I started
raising funds for Ryan that his sister Jennifer had
died of the same disease a few months after her
second birthday. This family had suffered enough
already and I wanted to do something to help
them.
The first event to take
place was the Mt. SAC Community College tissue
drive. There were over 5,000 people tested, and not
one of them was a match for Ryan.
At this point, fundraising
began to pay for the costs of more testing. This is
when I heard about the HLA Registry and how to
become a registered donor. A few months after the
HLA Registry was contacted, a possible match was
found.
Ryan had two
transplants---one before his second birthday and
one after. Both of these transplants looked
successful, but his little body had been through so
much that it could not handle this second
transplant. He died shortly before his third
birthday.
The HLA was a great help
to Ryan and his family. Even though the transplant
was not succesful for Ryan, without the HLA's help,
he would have not had a chance at all.
The HLA Registry
Foundation, Inc.
Facts/Information
The acronym HLA stands for
human leukocyte antigens, the genetic information
encoded on white blood cells. The Mission of the
HLA Registry is to assist patients with potentially
fatal blood diseases in finding compatible
unrelated donors for life-saving bone marrow
transplants, including helping patients and their
families raise funds for the HLA
tissue-typing.
Headquartered in River
Edge, New Jersey, the HLA Registry is one of the
world's leading independent bone marrow donor
registries. It is also the largest donor registry
of the Congressionally sanctioned National Marrow
Donor Program (NMDP), a coalition of 102 donor
centers throughout the United States.
All donors recruited
through the HLA Registry automatically become part
of the National Morrow Donor Program data base
which can be accessed by any patient in need.
Donors' records, which include names, demographic
information and HLA tissue types, are assigned a
confidential number and maintained in computerized
files. This privileged information is held in
strictest confidence and is not released for any
reason. In fact, a donor's identity is disclosed to
the patient only by mutual agreement and through
the donors and patient's written consent.
There are more than
120,000 potential donors registered in the
database, the HLA Registry has accounted for about
2,000,000 donors currently registered with the
National Marrow Donor Program.
The HLA Registry has
helped hundreds of families in their search for a
compatible donor. The Foundation has already
completed nearly, 18,000 first-level donor matches,
and has been responsible for successfully matching
patients with donors.
Since its establishment in
1986, over 205 transplants have taken place. In
addition, the HLA Registry has assisted other donor
centers in the U.S. and Europe in their
establishment, and continues to be a leader within
the World Marrow Donor Program network.
Each one of us could be a
match for someone with a blood disease. All you
need to do is contact a blood center near you or
call the HLA. These are just a few of the places I
know about that are associated with the HLA:
City of Hope
Duarte CA 1-800-835-5504
LA Red Cross CA
1-213-739-5200
Sacramento Blood Center CA
1-800-995-4420
San Bernadino Blood Bank
CA 1-800-879-4484
Marrow Donor program
Oakland 1-800-841-1986
Stanford Blood Center Palo
Alto 1-415-723-5532
C.W. Bill Young Marrow
Center MD 1-800-MARROW
Rockville NIH Marrow Donor
MD 1-301-496-0572
American Red Cross MD
1-800-787-4741
Puget Sound Blood Center
Seattle, WA 1-800-Donate1
Inland North West Blood
Center Seattle, WA 1-800-280-0151
ADWOFF > Newsletters > Edition
2 > Opening Our
Hearts
| 
