Thank you for the opportunity to testify today on the very important topic of
                        cord blood and why a National Cord Blood Stem Cell Bank Network should be
                        provided for to save the lives of some of this great nation's most severely ill
                       children and adults.

                        We first learned a little over 2 years ago that our one-year old son Spencer
                        had ALD or Adrenoleukodystrophy. 50% of ALD children have a deadly cerebral
                        onset of this rare neurodegenerative disease leading to loss of function and
                        death by age 10. The remaining 50% have a severe-to-deadly form as adults. A
                        parent's worst nightmare, this is the disease behind the film  "Lorenzo's Oil".

                        Spencer started to have repeated MRI brain studies and in February of last
                        year, MRI studies showed changes had started in his brain indicating a deadly
                        cerebral onset had begun.

                        Cord blood and bone marrow transplants are the only acceptable therapies
                        when a cerebral onset of ALD has begun and is caught in time.

                        Via the National Marrow Donor Program (NMDP) we had already been
                        searching for a perfect 6/6 bone marrow match and couldn't find one.
                        _____________________________________________________________

                        …metabolic diseases such as Hurler's, MLD,
                        Tay-Sachs, and others … can now be treated by a cord blood transplant.
                        _____________________________________________________________

                        We held on tightly to our 2 1/2 year old son Spencer while he was in a
                        pediatric isolation and intensive care unit for nearly 40 days. There he received
                        his cord blood stem cell transplant preceded by highly toxic medications
                        including massive chemotherapy. He was lucky. He had what was considered
                        an easy course of transplant.

                        At the same time, we saw kids who didn't make it as the procedure proved too
                        toxic. While cord blood stem cells work for most of their very fortunate   
                        recipients, more research needs to be done. More and higher quality
                        cord blood units need to be available not only for transplantation, but for
                        research purposes; and stem cell research in general needs to be carefully and
                        properly further explored to harness all of its life saving potential.

                        His cord blood transplant was just 13 months ago, but who's counting?

                        He is doing extremely well.

                        We see improvements and deficit reversal on a weekly basis. At only 6
                        months post transplant, physicians began to see improvements in Spencer's
                        MRIs as well as clinical presentation.

                        It appears that Spencer is actually re-myelinating as the early progenitor
                        stems cells from the cord blood are differentiating into other cell types in his
                        brain.

                        The MRI and clinical observations have been confirmed  both at Duke and by a
                        diverse team at the Children's Hospital of Philadelphia (CHOP). I believe
                        that the non-technical word they have used was "amazing", going on to say,
                        'They've never seen anything like this'.

                        Cord blood works.
                         ______________________________________________________

                        We now have a normal 3 year old son. His name is Spencer Barsh. 
                        Cord blood saved his life.

                        Thank you for your time and thoughtful consideration.