Hello, Todd!

Thanks for you support! And welcome to SBANC! I apologize that I
haven't been able to respond very quickly to this or your earlier e-
mail. We are working on the communications and registration for a
North Carolina Spina Bifida conference we're planning for August 10
at the Friday Center in Chapel Hill and it's taking a huge amount of
my time (but I'm happy to do it). The speaker line up includes 5
adults with spina bifida who will speak on various topics, as well as
some medical professionals. We'll have several breakout sessions and
some adaptive sports demos and talks. We're going to have an all you
can eat buffet lunch too. Hope you can come and please pass the word
around. I hope to get an opportunity to meet you in person. I saw
your Yahoo profile and sounds like we share a love for our faith and
fishing as well as the same age! John 21 is one of my favorite
chapters in the Bible!

I'll make sure you get on the mailing list for the newsletter and
registration. I'm also working on a Web version for people to print
out and mail in (ran into a glitch and have to call technical
support). I'm going to approach our board about opening it up to
people from outside NC, but at a higher registration fee.

I've heard about adult stem cells and I believe they do hold promise!
I'm not sure they're as beneficial as embroyonic cells. Perhaps Emily
could explain it better. I will also approach one of our medical
speakers about touching on this subject at the conference.

Kind Regards,

Mike



--- In sbaofnc@y..., jcfreak1984 <no_reply@y...> wrote:
> Bravo! Mike, you are the man. I don't care what anybody thinks. I'm
a
> new member to the group and have only posted a couple of time. I
> received my first Digest of messages today. At first I
misunderstood
> the posts and thought this club was in favor of embryonic stem cell
> research. Thanks to your posts I know otherwise. Though, I'm sure
> there may be individual members who are in favor of it. That is
their
> right and I respect that.
>
> Something that is not often reported in the media (surprise!) is
> Adult Stem Cell Research. What's the difference? Embryonic Stem
Cell
> Research kills a human being. Cloning manufactures a human being so
> that we can get the parts we need and this kills them. Adult Stem
> Cell Research kills no one and has shown more promise the the other
> two above mentioned methods. Those on this list who are interested
> can find info on this alternative to harvesting & murdering at this
> website www.breakpoint.org. You may have to search a bit, there's
> info on a lot of topics at this site.
>
> If holding all life sacred makes me a fundamentalist then, I wear
the
> banner proud. I'd much rather stand on this side than the side that
> would murder for one's own selfish gain, though I'm sure those in
> favor of embryonic stem cell research and cloning don't see that
this
> is way it's doing.
>
> Again, thanks Mike, for such a good post. By the way you had sent
me
> a post several months ago and I had been away from the club. I sent
> you an email in response and never heard back from you. I had
wanted
> to get on the mailing list and get in touch with some adults will
SB.
> Seems everything I find on SB is related to children with SB or
their
> parents. I'm almost 39, these things don't help me much.
>
> Todd
>
> 2 Samuel 9, Psalm 73
> --- In sbaofnc@y..., mhgates <no_reply@y...> wrote:
> > Dear Curesnow:
> >
> > Thanks for responding. I appreciate your efforts to answer my
> > questions honestly. I'm still not clear about your motives
> though...
> > That it just infuriated you and you needed to do something about
> it.
> > Why did it infuriate you? Are you a high school or college
student?
> > Do you own any stock in stem cell companies? Are you or a loved
one
> > affected in some way? I'm trying to understand where you are
coming
> > from...
> >
> > Let me explain my motives and why you may (or may not) have
> > difficulty getting support from this group:
> >
> > I can't speak for everyone here... I want everyone to understand
> I'm
> > only speaking as an individual now and not as the president of
> SBANC
> > (even though some of you are not in NC or even the US and my
> > involvement in SBA of NC and commitment to the group wouldn't
> really
> > matter to you anyway). However, if many others feel the way I do
> then
> > you might have a hard time convincing us to join your efforts.
> >
> > Would you take the time to hear me out as I have you?
> >
> > For me this is a huge ethical dilemma much like we faced when we
> were
> > expecting my daughter -- our first child. I am the father of an 8
> > year old girl born with SB... She's had 12 surgeries and uses a
> wheel
> > chair because it affects her at the T-12 vertabrae. But she has a
> > pretty happy life. She loves going to school and has lots of
> friends.
> > She enjoys playing with her little brother and cousins... She
just
> > got a (borrowed) handcycle and is having fun riding with us on
> bikes
> > now in the neighborhood. She plays wheelchair basketball and
> tennis.
> > She's a very active child. Don't get me wrong; there are some
hard
> > times. There's anger when people don't seem to care or are just
> plain
> > ignorant. There will be more as she grows up. But we wouldn't
> change
> > it for anything!
> >
> > I'm not sure you understand that SB is something that you can
find
> > out about ahead of time in a pregnancy. We knew our daughter
would
> > have it when we were only 5 months along in our pregnancy. The
> doctor
> > strongly suggested we get an abortion and try again.
> >
> > But we couldn't. He painted a very bleak picture. But it was
> against
> > what we know is right because of our faith in God and Jesus
Christ.
> > Faith is believing in something even when things look bad. It was
a
> > huge test of our faith. We couldn't do it because our hearts
> wouldn't
> > let us. God spoke to our hearts and calmed us when everything
> seemed
> > so crazy. He has been with us the entire time and helped us
through
> > many situations both related to her health and other things we
face
> > in life. God has blessed us with both our children. Our daughter
is
> a
> > blessing and we would never change what we decided -- even
because
> of
> > the hard times and the financial burden. God will provide and
> honors
> > our obedience to His word -- "Do not murder."
> > http://bible.gospelcom.net/cgi-bin/bible?
> > passage=EXOD+20&language=english&version=NIV&showfn=on&showxref=on
> >
> > I don't have all the answers. I'm just a Dad with a daughter I
love
> > very much, a family I love very much and a God I love very much.
> >
> > But perhaps you can understand my ethical dilemma now -- which
> others
> > may share in this group or not. Many people just choose to abort
> when
> > they learn their child will have a disability because it seems
> > easiest for everyone. I believe the statistic is over 70 percent
> are
> > aborted. You can say you are justified because you don't want to
> put
> > a child through the hardships of life with a disability. But my
> > daughter is glad to be alive! I believe everyone on this board is
> > glad to have a chance to live life, even though it is hard at
> times.
> > Even when it hurts sometimes. Maybe some of you had a similar
> > experience, or your parents did. My daughter is here because we
> > believed God and not the doctor. Even though He has not healed
her,
> > we know He has a special purpose for her life. We see how she
> touches
> > people with her love and sincerity. With her determination when
it
> > would be so much easier just to give up. That she can do all
things
> > through Christ, who strengthens her. She inspires me.
> >
> > I have met many of the people in this group personally. And I
> believe
> > God has a special purpose for your lives too -- whether you know
it
> > yet or not. You inspire me too. I pray for you.
> >
> > You may just think of me and my family as the same Fundamentalist
> > Christians that are against growing babies to kill them for stem
> > cells. Would you dare to walk in our shoes?
> >
> > Yes, we would like to see our daughter healed. But no, we
wouldn't
> > want to do it through a means that contradicts why she is here in
> the
> > first place: Because of our belief in the sanctity of life. That
> > every life counts -- even if it faces a disability. And that life
> > begins at conception. And we are teaching her our beliefs. And
when
> > she is an adult, she will make the decision for herself.
> >
> > Well, now we've opened up a narrow door. What if the stem cells
> > worked and you could walk when you never could before? Would you
> > still walk through that narrow door?
> >
> > We will all still die someday too soon unless Jesus Christ comes
> back
> > before then (because the Bible says we'll be given our glorified
> > bodies to serve Him when He does return). But if we die before
> that,
> > our spirit is taken up to Heaven to be with our God and to
worship
> > Him. He gave us the right to choose for ourselves to love Him.
And
> if
> > we love Him, we show it by obeying His Word. He doesn't want
> puppets,
> > but true love from the heart. He sent His only Son, Jesus Christ,
> to
> > die on the cross for our sins so we could have eternal life and
be
> > reunited in our relationship with God as we were meant to be.
> > http://bible.gospelcom.net/cgi-bin/bible?
> > language=english&version=NIV&passage=john+3%3A16-21&version=
> >
> > We all have our crosses to carry. Sometimes you just have to hold
> on
> > to what you believe. If holding onto my beliefs makes me a
> > fundamentalist, then I guess I am. I pray God will bless you with
> > open eyes and a tender heart for those who face hardships with
> > disabilities. I don't have all the answers, but He does. Lean on
> Him
> > for support in the bad times and good.
> >
> > Sincerely,
> >
> > Mike
> >
> >
> > --- In sbaofnc@y..., "curesnow" <no1899@e...> wrote:
> > > Hi! I wanted to reply right away to clear up a couple of
points:
> > > 1. I am not spamming! Ok, so I don't really know the
> definitions
> > > of spamming, but I think it means dropping lots of information
> > > indescriminantly everywhere and not following up. That's not
> > > me.
> > > 2. No, I do not know anyone personally with SB. That does not
> > > mean I don't care.
> > > 3. I am not from North Carolina. But as we go along, you'll
see
> > > why I have contacted you.
> > > 4. I am not a lobbyist, nor do I work for a biotech company. I
> am
> > > an advocate, i guess, for those who will be afffected by this
> > > Brownback Bill, which just so infuriated me I had to do
> > > something. That's why I am trying to get the word out to the
12
> > > states whose Senators are strongly considering backing this
> bill.
> > > My Senator is against it. It wasn't enough for me to just be
> glad
> > > about that!
> > >
> > > Now, most importantly- how does this research pertain to SB?
I
> > > will get you some answers and some links as fast as I can. I
> > > have piles of them to sort through, but I wanted to write
> > > immediately first.
> > > Some basic sites? www.nih.org, or there are great articles on
> > > www.nejm.com (do a search on thier site)