Response to this statement:
>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.

Certainly there was misinterpretation, but let's not get caught up in
one person's opinion being representative of the WHOLE group (it
might be the opinion of us all, but I'm not comfortable making one
person's voice representative of mine or anyone else's). I just
wanted to make sure that we all are aware of that. While I do agree
that embryonic cell research isn't good, I think it would be unfair
to characterize comments by one or more people in this group as
representative of every individual's thoughts on any other issues
that may come up. Just wanted to remind us all of that so that we are
still allowed to form singular opinions on whatever topic arises.
After all, that's what makes good dialogue and a respectful support
system--differing opinions.

And as proud as we all are of our beliefs, I respect the idea of
welcoming other people with differing backgrounds, views, faiths,
etc. to bring their questions, concerns, and spina bifida-related
topics to this group. This is a spina bifida-focused group, right?
And if those two ideas aren't shared by the group at least (we've got
to share something to have a group, of course), I'm not going to feel
very comfortable sharing in the future.

I hope I've worded this in a way that it will be taken as a
respectful reminder of what I thought the purpose of the group is and
it won't be taken offensive. I might generally agree with the group
so far, I just don't want it to be assumed that we all agree with
everything that is said all of the time or there wouldn't be much
good discussion to help us form our own strong, personal convictions
in life.

Thanks!

Monica
Adult with SB &
Speaker on Aug. 11th





--- In sbaofnc@y..., mhgates <no_reply@y...> wrote:
>
> 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)