Something New in Peru
Pepsi Refresh
Mitzvah Bandz Bags
Birthday
Another Parshas Vayeitzei
Hi All,
I've
wanted to write for so long but my mom is always like, "We'll do it as
soon as we finish this or that." Today, she's like, "I can't do this or
that until we write a Caringbridge update."
I'm going to start
with the most pressing "issue". It's not really an issue - it's more of
an event, but almost like a crisis even. Mom says it's another twist
in the story of my life, another bitter sweet occurrence.
My new
Tay-Sachs friend - who I haven't even met yet - had an experimental
procedure in Peru this past month. It's sort of created a frenzy and so
many of us are just waiting and watching with bated breath. Her dad
put up a 50 second video of a physical therapy session done two weeks
after the procedure and he received 700 emails and facebook messages
that very day.
The video is on Keith Brown's facebook site and in his online journal on www.helpforaspen.com - the Progress After Peru
page. The video is of a 14 month old girl lying on her belly on an
exercise ball. The therapist rolls her up and then down on her feet.
(I've done that tons of times.) But when she gets to her feet, she
stands, and with the therapist's hands on her hips and waist only, she
lifts her head high, straightens up her back and looks around. My mom
cannot even write this without crying. She's watched the video a
miliion times and seeing my friend stand tall just chokes her up. She
doesn't even know how she feels. It's just a feeling of overwhelm.
Why
is that such a big deal? Because 2 weeks ago, before the procedure, she
couldn't lift her head; it would just flop like mine does. It's such a
dramatic change in such a short time, it's impossible not to feel the
miraculous nature of this treatment.
Well, my friend's name is
Aspen Grace Brown and she's my neighbor in Alabama. I don't think she
knows she's my friend yet, but she is. The procedure she received was
an injection into her spinal canal in the lower lumbar region(near your
buttocks). The injection consisted of a cocktail of
-Neuronal (Brain) Stem Cells
-Brain Derived Neurotrophic Factor
-Glial Derived Neurotrophic Factor
-and Nerve Growth Factor
The
cocktail gets into the spinal canal and circulates all around. It
eventually gets up to the ventricles in the brain and circulates all
around up there, and then it gets into the brain itself.
The article that discusses it (Mom posted it on Project Shui on the "Something New in Peru" page) calls it a "Stem Cell Gene Enzyme Treatment" -- sounds like a combination of everything under the sun.
The
stem cell injection into the spinal canal is different from the stem
cell transplants that my other friends received. This injection does Not
require any immunosuppression, and there is apparently no rejection.
The stem cells in this procedure are already differentiated into Neuron
Stem Cells (a Neuron is a Brain cell); they go mingling with the other
brain cells right away. The cocktail also includes different
Neurotrophic Factors (helps the cells grow) and nerve growth factor,
which should enhance the effects of the transfused cells.
In a
stem cell transplantation, the cord blood stem cells are transfused into
the patient's blood, but only after the patient receives a ton of
immunosuppressant medications, making them highly susceptible to
infections.
In this new procedure, the patient is administered
two of these injections a couple of days apart. Then they get on the
plane and go home. They do require follow up "booster" shots of the
stuff, though.
Aspen was also given some oral agent that is
supposed to increase levels of Hex A, the enzyme that Tay-Sachs kids are
missing. Mom is kind of skeptical about this medication. It wasn't
specified in the article, and up until now, enzyme replacement has not
been realistic for various reasons (enzyme too large to pass through the
tight blood-brain barrier...). We'll have to see about that part. But
if there is a Hex A pill out there somewhere, send some to me! I don't
mind if you have to smuggle it into the country. Just stick it in a
bottle of Miralax or something like that.
This procedure is done in Peru because it is not FDA approved. The company/doctors that do it are StemCellRegenMed,
Inc. Take a look at their site. They're doing this stuff for many
different diseases, including ALS, spinal cord injuries, diabetes, and
even autism. I don't know how it works for those illnesses, and as far
as I was able to research, most patients are only a few months out from
the initial procedure. I think the cost is $30,000, but Mom's not sure -
check the HelpForAspen web site.
Mom says she's on edge and is now flooded with emotions from every direction.
Just a quick blurb about Pepsi Refresh. Pepsi gives away tons of grant
money every month for a number of different causes - see www.refresheverything.com.
Mom is gathering together the information, videos, pictures, etc. in
order to apply for a grant for the Cure Tay-Sachs Foundation. She's
going for the December grants. If a grant is not accepted, they
apparently help you out with your application and web page so that you
can resubmit the proposal the next month. Mom's going for the gold -
the $250K grant - at least this time around. They also have $5K, $10K,
and $50K grants. Mom urges you take a look at the site. Whether you
want to raise money for Tay-Sachs, or for any other project, this is a
great place to go. There are applications in different categories.
Animal stuff (rescues ...) are at the tops of most lists. There are
applications for various illnesses, for school programs, for community
programs. Take a look.
When an application is accepted, it is
posted on their site and people have to vote for your program. This
will be the big stumbling block b/c the Tay-Sachs community is so
small. We'll get to that later. Anyway, when the time comes, one can
vote for the same project once a day, every day (I think you can vote
for more than one project each day).
We will definitely let you know how this unfolds.
Mom has packaged up some 1600 "Mitzvah Bandz Bags" that I'm giving to
the Jewish Day School students in Atlanta. It's in celebration of my 8th
Birthday, and each Bandz Bag has a pack of Silly Bandz in them. I'm
not soliciting donations for this project, just prayers. Mom says that
prayers from school-aged children are extra special. Mom missed my
birthday deadline. She thinks we'll go with the start of Chanukah to
give them out; that week coincides with the week I was diagnosed with
Tay-Sachs 7 years ago, so it's kind of extra meaningful.
Anyway,
we have an extra 80 packs of Christmas-themed Silly Bandz that we will
give to my Tay-Sachs friends after we're done with all this. Mom didn't
think the Jewish Day Schools would appreciate that theme.
I have to go right now. Yoni is forcing Mommy off the computer. I'll try to finish up this entry tomorrow.
Love,
Rachaeli
