Unless … to sign or not to sign & stem cells

Unless – to sign or not to sign

A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history. ~ Gandhi

Karen Kingrey initiated a petition with a few folks that calls for a stop on experimenting on Deaf newborns and infants.

http://signon.org/sign/stop-stem-cells-experiment?source=s.fwd&r_by=1127000

Hope you will take the time to sign this right, just and good petition and then tweet, facebook, and email it to ur friends, neighbors, and relations.  Don’ let them consign being Deaf to history.

The only thing wrong with being Deaf is being subject to audism (the belief that to hear and/or behave as a hearing person is superior to being Deaf).

Folks used to try to FIX gay, lesbian, bi and transgender folks all the time before – even consigned them to that big ole book on psychological abnormalities but they STOOD and said NOPE.  And now look they in the army now and getting married!

Folks used to try to FIX women and say they were the weaker sex and would ruin the work place with temptation and had to act like men to get ahead in the game etc but they STOOD and said NOPE. and they said “we’ll do it our way” and look they be running countries and changing the world.

Folks used to try to FIX African-Americans and say they had diseases and were intellectually inferior but they STOOD and said NOPE.  and said “Say it Loud.  We’re Black and Proud!” and look we have an African-American president and its so cool and hip to be Black that White folks are trying to do it.

And we all know what they done said about Jewish folks and how WRONG that was and how really really BAD THINGS HAPPENED cuz not enuf folks STOOD long enough and firm enough to say

NO!

STOP!

and ¡Ya basta!

sign it folks or don’t and say good by to your signing ways

the “option” is yours – just remember the newborn has no option

Most especially i call upon listening and spoken language specialists LSL / AVT specialists, the Alexander Graham Bell Academy and Association FOR the Deaf and Hard of Hearing, and doctors to sign this petition because presently that study has AVT/LSL and doctors as collaborators and PIs and that is NOT cool.  (even they have the same last name – maybe a husband and wife team – sweet NOT)

http://www.multivu.com/mnr/53686-cord-blood-childrens-memorial-hermann-fda-approved-stem-cells-hearing-loss

Your profession should not be engaging in eugenics.

peace

patti

Unless someone like you cares a whole awful lot, nothing’s going to get better. It’s not.

~ The Once-ler

Advertisements

22 Comments (+add yours?)

  1. antonia lindsey
    Jan 15, 2012 @ 14:57:42

    Signed, sealed and delivered! Bravo! Will find a way to share on FB! Now is the time!

  2. Joseph Pietro Riolo
    Jan 15, 2012 @ 15:14:17

    It is my personal perspective that the position that you and others hold in opposing the experimental trial goes too far.

    Our body has the ability to repair the damaged cells or regenerate the lost cells but not every cell can be regenerated or repaired. Nervous cells are some of the cells that cannot be regenerated. So are the hair cells in the cochlear. Once the hair cells are destroyed, they are gone forever.

    If a baby is born with the full functionality of hearing and later loses it to disease or accident, it is simply morally and ethically wrong, from my perspective, to stop this baby from regaining the functionality of hearing. That experimental trial is an attempt to induce the regenerative ability that is already in the stem cells to regenerate the lost hair cells. The only way to see if it works is to try it on the babies or toddlers (less than 18 month old). Of course, I am concerned about the safety and risks of the trial but science cannot progress without taking some risks. Of course, the experiment should be always done on the animals before it can be done on the humans.

    I completely support Ms. Karen Kingrey’s right to create a petition and collect signatures from other people. This is America. I won’t stop her from creating a petition and collecting signatures. But, the position that the petition stated is too extreme to the point that it suggests that once a baby becomes deaf due to disease or accident, he or she must be deaf for the rest of the life.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  3. handeyes
    Jan 15, 2012 @ 16:14:11

    Antonia big thanks

    Joseph I was wondering when us pop up and here u be

    This is experimentation on newborns joseph

    That is the definition on EXTREME

    Folks taking out a petition to say stop doesn’t suggest anything except what it’s saying

    Interesting to see how u see it

    Peace and love
    Patti

  4. Joseph Pietro Riolo
    Jan 15, 2012 @ 17:46:08

    Huh? Are you suggesting that I should not come to your blog whenever you have new posts?

    It is a matter of perspective whether the experimental trial is extreme. To me, injecting differentiated stem cells (or undifferentiated stem cells along with proteins or chemicals to trigger the regenerative ability in the stem cells) in cochlear is not extreme and is a lot less extreme than cochlear implant surgery itself and many other medical operations. But, your and other’s mileage may vary. That’s not real point when I talked about extreme in my previous comment.

    It is pretty obvious from the petition that once a baby becomes deaf, his or her functionality of hearing should not be restored. It said to go through the route of ASL, English and Deaf culture. Although it does not say explicitly, it seems that doing experiments to restore the functionality of hearing is an act of audism. This specific idea, this specific paradigm, this specific kind of thinking is too extreme for me.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  5. dianrez
    Jan 15, 2012 @ 19:27:48

    One side is saying: Don’t experiment on newborns and young babies. The other side is saying: But this age is best for hearing restoration before auditory patterns, speech and language are learned. In a free country, one cannot impose decisions on others where it is not desired and where emotions rule more often.

    If this petition asks that ethical and safety questions be asked first before experimentation proceeds, I’ll sign. If it asks for a flat out prohibition on all treatment, I cannot sign, remembering that there is a lot of laboratory testing before anything reaches human trial.

    Philosophically, experimentation involves risk and loss, but we all profit somehow. If some babies are damaged, we learn (again) the hard way that life and health are worth more than hearing. If a future adult who was an early stem cell receiver has health problems, we learn something even if it is a bitter lesson. In every society, we must have Deaf people, and we also must have the risk-takers and foolhardy ones. The onus is on the parents and the doctors to take the gamble and the consequences theirs to suffer.

    Education is the only way we can fight this devaluation of humans just because they have a deaf element. People fear the unknown and know little about living as Deaf people, so a little education might resolve a lot of questions and reduce the pressure to find drastic cures.

  6. handeyes
    Jan 16, 2012 @ 02:29:54

    joseph – im gonna copy and paste ur 2nd comment since its in the public domain and so i can reply clearly and hopefully concisely (see see – can patti do it re: being concise?)

    PATTI IN CAPS

    Huh? Are you suggesting that I should not come to your blog whenever you have new posts? I AINT SUGGESTING NOTHING – I WROTE “I was wondering when us pop up and here u be” THIS MEANS – WOW LONG TIME NO SEE AND I SEE WHICH TYPE OF ENTRIES INTEREST YOU. THAT IS ALL. YA KNOW U R WELCOME HERE TOXIC SUIT OR NOT. I TRUST US TO BE ABLE TO SAY WHAT WE GOT TO SAY TO EACH OTHER TRUTHFULLY SO IM SORRY IF HOW I SAID “I was wondering when us (should read as u’d) pop up and here u be” SEEMED TO SUGGEST ANYTHING BEYOND WHAT IT SAYS

    It is a matter of perspective whether the experimental trial is extreme. To me, injecting differentiated stem cells (or undifferentiated stem cells along with proteins or chemicals to trigger the regenerative ability in the stem cells) in cochlear is not extreme and is a lot less extreme than cochlear implant surgery itself and many other medical operations. But, your and other’s mileage may vary. That’s not real point when I talked about extreme in my previous comment.

    JOSEPH – THE MRI DONT BOTHER U? THE SEDATION DONT BOTHER U? THE POSSIBILITY THAT MAYBE THE BABY MIGHT BE HAVING FALSE POSITIVE TESTING / RESPONSES AND ACTUALLY HAVE SOME HEARING AND HOW DOES THE STEM CELLS KNOW TO ONLY GO TO THE DOWNTRODDEN ONES RATHER THAN THE UPRIGHT ONES?

    RE: EXTREME – SURE WE CAN SAY ITS DEBATABLE AND NOW WE CAN SAY ITS POINTLESS BUT I WOULD WAGER THAT MOST FOLKS WILL SAY ‘YIKES YOU ARE DOING THAT TO A NEWBORN WHEN BEING DEAF IS NOT A LIFE THREATENING CONDITION AND IN FACT SOME FOLKS LIKE BEING DEAF’

    It is pretty obvious from the petition that once a baby becomes deaf, his or her functionality of hearing should not be restored. It said to go through the route of ASL, English and Deaf culture. Although it does not say explicitly, it seems that doing experiments to restore the functionality of hearing is an act of audism. This specific idea, this specific paradigm, this specific kind of thinking is too extreme for me.

    RE: OBVIOUS – IT IS OBVIOUS THAT THE STUDY WILL BE DOING EXTREME THINGS TO THESE NEWBORNS THAT ARE NOT NORMAL.

    IT IS EXPLICIT IN FACT.

    SAYING THAT A DEAF BABY HAVE ASL, ENGLISH AND DEAF CULTURE IS NOT INHUMANE. IT IS NOT UNETHICAL. IT IS CARRIES NO POSSIBLE RISKS. IT CARRIES NO FALSE PROMISES OF MAKING THEM INTO SOMETHING THEY ARE NOT.

    RE: WHAT IS AN ACT OF AUDISM – BINGO

    IF NAMING THE ACT OF EXPERIMENTING ON A 6 WEEK OLD NEWBORN AS AN ACT OF AUDISM (WHICH IS THE BELIEF THAT TO HEAR AND OR BEHAVE AS A HEARING PERSON IS SUPERIOR TO BEING DEAF) IS TOO EXTREME FOR YOU – I AM DEEPLY SADDENED TO LEARN THAT.

    THANKFULLY I AM STILL ON MY PATH TO AIM TO BE AN EXTREMIST OF LOVE – SEE MLK JR (HAPPY BIRTHDAY MARTIN – SO GLAD U WERE BORN) LETTER FROM A BIRMINGHAM JAIL RE: BEING AN EXTREMIST OF LOVE

    MUCH PEACE AND LOVE TO U JOSEPH AND I AM NOT SUGGESTING ANYTHING EXCEPT FOR THE FACT THAT I DO WISH U POSITIVE PEACE (NOT NEGATIVE PEACE – SEE MLK LETTER AGAIN) AND TRUE LOVE (SEE GANDHI AND JC AND MLK AND US)

    PATTI

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  7. handeyes
    Jan 16, 2012 @ 02:33:20

  8. dianrez
    Jan 16, 2012 @ 03:27:43

    Patti and MZ, the second link IS the exact research proposal that I was searching for previously listing clinical requirements for participation in the cord blood study.

    On rereading it, it says: The primary objective of this study is to determine the safety of autologous hUCB infusion in children with acquired hearing loss. The secondary objective is to determine if functional, physiologic and anatomic outcomes are improved following hUCB treatment in this patient population.

    In other words, the proposal aims to see first if it is safe, and second, if it is effective. This proves that current medical orientation is not necessarily beneficial for deaf infants nor for deaf people in general.

    However, it is still a fine line between forbidding all medical treatment/taking away parental choice, and demanding a more humane approach by asking that ethical questions be answered first before proceeding.

    One question is: is this more or less harmful than cochlear implantation? If it results in some babies avoiding the far more invasive and less-effective implantation of foreign substances next to the brain, it may be a good thing.

    A bigger question that we’ve been asking all along: what is so terrible about being deaf that some people are leaping at extreme interventions ranging from severe social oppression all the way to surgical invasion? If we demand that this question be thoroughly explored, it may move people to revise their paradigms.

  9. handeyes
    Jan 16, 2012 @ 03:42:59

    thanks Dianrez – bingo re: ur last paragraph

    re: forbidding something – if folks can ADVOCATE against fracking in NY state why the heck cant we say no stem cells to experiment on newborns

    the quest to make everyone the same will result in some very bad drinking water for the human race

    stem cell experimentation can and is used for adults in VERY serious medical conditions

    just because stem cells on newborns dont involve an electrical device to be implanted does not mean it is NOT invasive

    Medicine/Medical . requiring the entry of a needle, catheter, or other instrument into a part of the body, especially in a diagnostic procedure, as a biopsy.

    dictionary.com

    eugenics should not be justified just because they might not be as invasive as another system in place

    peace

    patti

  10. Joseph Pietro Riolo
    Jan 16, 2012 @ 15:09:55

    I smiled at your mention of toxic suit. It is not accurate term because if I were to wear toxic suit, I would be spreading toxic matters all over the place. 🙂 It is the asbestos suit that I am supposed to wear if I am walking into toxic environment. After you clarified your statements, the fault for misunderstanding and misinterpreting your statements is mine alone.

    I am somewhat comfortable with many, if not all, medical technologies. MRI on newborn may offend you but I do not find it objectionable. I am comfortable with sedation if the benefits of medical operation or procedure outweigh the risks of sedation. There is always a risk of false positive result. There is absolutely no such thing that is totally free of risks. I would expect that these people involved in the stem cells for cochlear to perform some tests to reduce the risk of false positive result. You raised a good question on how stem cells can know not to intervene the hair cells that are not destroyed. Without reading any research on the animal experiments, I could assume that these people have developed a way to handle this issue.

    Where we differ is the level of tolerance that we have for the medical technologies. Your tolerance for medical technologies may be lower than my tolerance but I don’t think that it is right for you to force your tolerance on the parents of babies and toddlers that lose their hearing to disease or accident. Let them look at all possible options and let them decide what is best for them. This means that we should not stop the medical research on stem cells from creating another option for the parents to consider.

    I am not fond of appealing to the famous people. It is not because I don’t like them or their wisdom. Sometimes, the quotes coming from the famous people are taken out of context or selective to serve one’s own purpose. I don’t even think that if these famous people were alive today, they could approve the opposition against the medical research on the stem cells. One of the acts of love is healing not just in spirit but also in physical. If the medical research on stem cells to regenerate the lost hair cells proves to be successful, I would state with high confidence that these famous people will find any opposition to the medical procedure that heals the cochlear to be highly offensive. It is not and it is never an act of love to prevent the babies and toddlers that lost hearing to disease or accident from being healed with the restored cochlear even with their own stem cells.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  11. deafa
    Jan 16, 2012 @ 17:09:51

    this trial is for babies who lost their hearing, maybe from complicated birth or diseases (I think they can’t those who are genetically deaf unless they can change the genetic coding and making sure their body will not reject it)

    I would be scare of tumors as I know cancer is caused by abnormal growth of cells. they should test on adults who is willing to take the risks.

  12. Joseph Pietro Riolo
    Jan 16, 2012 @ 18:09:21

    To deafa: Yes, there is a real possibility that stem cells left uncontrolled can become a tumor. Scientists are still researching on how to stop stem cells from growing indefinitely once they produce enough specific cells. I do not know all the details in the research on stem cells for cochlear but the fact that the research has reached the Phase 1 stage strongly suggests that the scientists found a way to control the stem cells for hair cells.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  13. PopeMistress
    Jan 17, 2012 @ 01:59:54

    fyi: I just copied and pasted on different several (maybe more than 5 but I lost my counts already) Catholic FB groups. -> As you know that The Catholic Church is against embryonic stem-cell research because it involves the destruction of human embryos. Pope John Paul II said embryonic stem-cell research is related to abortion, euthanasia and other attacks on innocent life. Please do your honor by signing the petition now to stop FDA using the Stem Cells against us the Deaf Community. Time is sensitive. Thank you for your support the petition. (just got this info from that link: http://​www.americancatholic.org/​news/stemcell/#Background I just don’t know if that helps more people to sign on petition. (with that same Karen Kingrey’s petition online link above on your first paragraph) good nite. im reporting to work early ot tmw.

  14. PopeMistress
    Jan 17, 2012 @ 02:02:30

    oh wait a min. I forgot to give you ladies, CONGRATS on this publishing news around the world: http://www.prweb.com/releases/2012/1/prweb9108761.htm Cheers!!! Now me off to bed for good.

  15. dianrez
    Jan 17, 2012 @ 02:43:59

    Joseph: regarding tolerance for medical risks. I feel that younger parents will be more tolerant of risks (even heedless of them) because at that age, they do not have either direct or indirect experience with medical failures.

    Grandparents, on the other hand, may be less tolerant depending on their experience. Personally, I’ve been through a few surgical and several medical procedures and have realized, in retrospect, that some were ineffective and perhaps unnecessary. (I still have to live with the effects from an operation that was supposed to improve my mobility but instead limited it.) In my years, I have listened to many friends who had surgery and were not happy with the results or who lost relatives as a result of it. Medicine is more of an art than a science, as any doctor will tell you. As an art, it depends on and demands experimentation.

    While I wouldn’t take away choice from anyone, I would strongly advise of the risks and their seriousness. For example, a report was published recently that children who were anesthetized or sedated in infancy had a higher percentage of problems later in childhood. It was only in the last generation that we realized even light alcohol or tobacco use in pregnancy had permanent effects on the baby.

    Patti is right: stem cell treatments are used for potentially fatal diseases such as leukemia, other cancers, and blood disorders. Using this to treat otherwise healthy deaf babies is ridiculous. We need to educate people and give them a sense of proportion. Then, if they still are so afraid of their child growing up deaf that they would take on more risks, let them teach us what worked and what didn’t. All we can do in that case is pick up the rest and make the best of their remaining potentialities, just as was done in the past 200 years of Deaf education.

  16. dianrez
    Jan 17, 2012 @ 02:59:07

    Interesting website by the Coalition of Americans for Research Ethics (CARE):
    http://www.stemcellresearch.org/

  17. PopeMistress
    Jan 17, 2012 @ 09:25:53

  18. PopeMistress
    Jan 17, 2012 @ 10:11:42

    In the US, investigations by Lila Rose, Operation Rescue and others have revealed that abortion providers are turning a blind eye to statutory rape; are open to assisting pimps to use underage prostitutes; and are willing to accept donations that are to be spent on racist programs. http://www.lifenews.com/​2011/12/27/​six-reasons-pro-life-advoca​tes-should-celebrate-this-​year/

  19. PopeMistress
    Jan 17, 2012 @ 10:20:16

    Confessions of an Ex-Abortionist
    BERNARD NATHANSON

    http://www.catholiceducation.org/articles/abortion/ab0005.html

  20. Joseph Pietro Riolo
    Jan 18, 2012 @ 00:35:51

    To Dianez: I am fine with your opinion. You can share your experiences with others even to the point that you think that treating deaf babies is ridiculous. I like what you wrote on the risk-takers. What the petition is trying to do is to prevent people from becoming the risk-takers and thereby, preventing them from creating or discovering new ways for the deaf babies and children.

    To PopeMistress: The stem cells that are in the umbilical cord, sometimes called “progenitor cells”, are not same as embryonic stem cells. Many people who oppose embryonic stem cells on moral, ethical or religious grounds fully accept stem cells in the umbilical cord because no life is destroyed while the stem cells are being harvested from the cord.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  21. PopeMistress
    Jan 18, 2012 @ 10:23:48

    http://www.doctorsforlife.co.za/index.php/issues/prostitution/prostitution-when-will-we-ever-learn/

    anyway I was not expecting other person to reply my link. I somehow got lost one link about one priest and a prime minister in Milan, Italy which they both did run prostitution ganga ganga something like that and make money out of on something like stem cell to keep them more young. oh well I just left a link and learn something about prostitute got pregnant and pimp or self prostitute earn money from stem cells??? I was thinking of pimp who did really cruel on very under young age prostitutes out there. Pimp did really bad manipulating young women or children who have to perform prostitute. who knows?.

  22. handeyes
    Jan 22, 2012 @ 03:11:30

    my heart kinda crashed somewhere along the way in this thread

    something about the sentiment of “hey we gotta test this stuff on somebody and it might as well be the newborn innocent” that i just went – no. no, i will not bother trying to explain why that is WRONG.

    cuz its self-evident folks and if it isnt well it should be and if it aint then maybe YOU r the one who should have been prodded and poked and sedated and run in and out of an MRI machine numerous times and then re-injected with your own stem cells in the hopes of improving your sense of compassion and acceptance of diversity on this planet.

    there is nothing wrong with being Deaf

    there is plenty wrong with saying to be the same is to be equal cuz it aint

    peace & love

    patti

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: