Thanks, Monica!

I agree that all opinions are welcome here! That's why I began my
original post with that I was only speaking as an individual and not
necessarily for anyone else -- though others may share my opinion.

My beliefs are key to my opinion (and to who I am) and I hope I did
not express these in a way that offended anyone or made it sound like
I expected everyone to believe as I do. However, I'm glad I can
freely express my opinion, even if it does include my beliefs --
because I cannot separate the two.

Thanks for responding and I hope others will do so as well.

I look forward to your presentation at the conference on Saturday,
August 10.

Sincerely,

Mike



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