In the News: Occupy roc, Felix, De’VIA artists, & Stem Cells

heye just a quick note of some news items – the bottom one is the worst so if u just wanna scroll down, feel free

OCCUPY ROCHESTER TRIAL

1. Judge Johnson ruled to dismiss the charges against some of the Occupy Rochester folks who decided to stand in the park after dark for free speech, free assembly, and free press (a RIT college “Reporter magazine” reporter was arrested too)

Some folks arrested had accepted the ACD + 24 hours of community service but most of us decided to fight it

a total of 48 people had been arrested (32 on the first night and 16 a few days later) a few days after that the Mayor of Rochester reached an agreement with the Occupy Rochester folks to let them be there 24/7 and this week they have been celebrating 2 month in the part.  the agreement was to expire today but it is said it will be extended to the spring since the peaceful protestors have been so peaceful.  SWEET.

thanks to all who can and do stand up for our first amendment rights and thank u to all the folks who showed support, gratitude, concern, and love for me during all of this.  really im very moved by how good some folks are

NOTE: (added today 1/13) the Center for Disability Rights (CDR) had a meeting with Chief of Police Sheppard with two other representatives from the Rochester police dept. and invited me to join.  The meeting was great – Chief Sheppard seems very sincere and dedicated to doing right by Deaf folks and made several commitments towards that end.  Thank u to Rochester PD and CDR.

FELIX GARCIA

2. some folks had taken the time and heart to send Christmas cards or a note to Felix Garcia – a Deaf man who has been imprisoned for nearly 30 years for a crime his Hearing brother recently confessed to committing set up Felix to take the blame.  Felix has written back to some people.  i got a nice letter from him expressing gratitude for the card, sharing how hard things are and letting me know im on his prayer list.

I’m on HIS prayer list. this touched me deeply – that someone could be wrongfully incarcerated, experience horrible abuse, and suffer severe communicaSHUN access issues and he puts ME on his prayer list.  WOW.  im just awed by this.  so i hope ya all will take the time to write Felix or sign the various petitions out there.

don’t know who Felix is – you can get the link to the Mother Jones article about his case and see the Governor of Fla office reply to Audism Free America’s letter calling for Felix’s release at: http://audismfreeamerica.blogspot.com/2012/01/fla-gov-scotts-office-reply-to-afa-re.html

Ridor has said that a notable top civil rights lawyer has agreed to take on Felix’s case pro bono so lets hope it goes forward and justice is served.  This doesn’t mean you all can rest easy.  You should still do something if so moved (write Felix, sign the petitions, write to the different groups in the governor’s response etc)

NANCY ROURKE

3. Prolific and powerful De’VIA artist Nancy Rourke has a video up showcasing (http://www.youtube.com/watch?v=EvnUW11EJFU&feature=colike)

Solitary Deaf Prison by Nancy Rourke

her works from this past year and has already created several to ring in the new year.  One of her recent works is Solitary Deaf Prison.  I just love how she take contemporary Deaf issues and creates visual testimonies and records of these events and people.

WARREN MILLER & CHUCK BAIRD

Still image from a scene from Switched at Birth program - Warren Miller's "I Love You" artwork in the background

4. Warren Miller’s artwork will be the back drop in a scene from Switched at Birth.  Warren Miller is a great De’VIA artist who some folks at Switched at Birth TV program discovered via Chuck Baird Foundation emerging artists section.  The program has purchased four of Warren’s paintings and he just emailed me that his “I Love You” work will appear in the next episode.  Its cool that the program is so supportive of Deaf actors and artists!

NOTE: keep your prayers and thought on famous and marvelous De’VIA artist – Chuck Baird.  He has had cancer for several years now and it is tough.

clips from a film by Tracey Salaway about Chuck and his art at http://www.youtube.com/watch?v=lPGr9gNf4Y0

We Love YA CHUCK

EUGENICS

5. Stem cell experimentation on Deaf infants ages 6 WEEKS old to 18 month old

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

im speechless and signless folks.  these are babies!  if these were baby kittens the PETA would be making a stink probably.  How did the FDA approve this?

H O W ????

and Wake the #uck up folks – i have been tired of being the town crier!

do ya believe me now?  coming for a pair of ears near u

peace

patti

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18 Comments (+add yours?)

  1. deafwizard
    Jan 13, 2012 @ 17:21:29

    Patti,

    Want to say that we, Deaf and Hearing (who support Deaf community) alike, need to set up a petition against this stem cell experimentation on Deaf infants. Bring it to Senate, House of Representative and Congress that this must be stopped before it’s too late. We all can do this and it will prevent FDA from ever approve of anything like Cochlear Implant as well.

  2. handeyes
    Jan 14, 2012 @ 02:40:31

    deafwizard – i believe Karen Kingrey – Deaf activist – is working on a petition. That is one important step and petitioning the govt to stop the FDA from sanctioning and approving of experimentation on infants is an important thing to advocate for.

    Letter writing campaign is another.

    Peacefully demonstrating in front of the Children’s Memorial Hermann Hospital and/or the Cord Blood Registry corporation is another.

    We best get busy, eh?

    let me know if u get a petition going or do any activism

    all hands on deck folks

    peace,

    patti

  3. PopeMistress
    Jan 14, 2012 @ 11:27:24

    yes YES I’m trying to wake the fxxx up but I guess I need more milligram doses of coffee myself. oh well. I already left my comment on U.S. Food and Drug Administration FB wall since after they did posted the link: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm

    FDA Warns About Stem Cell Claims

    Don’t be fooled by unscrupulous people who offer hope through unapproved stem cell therapies for diseases or conditions for which few treatments exist.

    Don’t know if they will make action after I did gave to them with that excatly same internet link as you did. They the FDA should have run to make a real fast action in Houston Texas- Children’s Memorial Hermann Hospital before too late!!! gotta go run to work now. hugs

  4. PopeMistress
    Jan 14, 2012 @ 11:43:47

    Done share your blog on FB wall and told them to wake up and watch out for Karen Kingrey to make petition online for us to share and also we need to write letter too… thanks

  5. PopeMistress
    Jan 14, 2012 @ 11:51:14

    oh that’s so nice of Ridor for being so thoughtful of Felix!!!! oh boy!!!

    By the way I’m not going to let one person who did stopped me since he did blah blah blah negative about Florida Governor!!!! Got tired of his famous quote “you ought to read this” and put nasty comments on my FB wall while he did not even bother to leave his comment on other Deaf FBers!!!! I kept asking myself why me why me why me??? grrrrrr at his ego nasty comments. I did asked him if he’s uspet with me. he said no but I could tell that he likes to pick on me while he do not even bother to leave his comment on other Deaf FB…. Just thinking about blocking him for good… oh well.. thanks for allowing me to express my thoughts. anyway, even if the Florida Governor is no good, should we make the cc to Earth Jones and or public media news????

  6. dianrez
    Jan 14, 2012 @ 15:42:06

    Just read the research proposal for the stem cell experiment on babies–

    In a nutshell, the babies are to be transfused intravenously with THEIR OWN cord blood that was saved from their birth. The ones selected must have become deaf after birth from meningitis, injury, or other external reasons. Not accepted are those who became deaf from genetic reasons or have malformations of the cochlea, or have cochlear implants.

    This brings up an ethical question: does this mean it is non-invasive, as it is native cells they are using, and is only medical treatment of a condition that should not have happened in the first place? More questions: are they risking unpredictable future side effects? If the child does not become fully hearing, how good will be the partial hearing be for everyday purposes? Will the parents be counseled on all options available?

    Not mentioned is future research: if this works, who will be next to be experimented upon? Why are adults not being considered at this point?

    Also not mentioned is why they are not considering just accepting the hearing status of the infant and simply working with it? Is it because they ASSUME that hearing is a given and its absence is therefore assumed NOT GOOD? What a harmful perspective to have!

  7. handeyes
    Jan 14, 2012 @ 15:57:39

    pope mistress – that is an important link re: FDA and stem cell caution

    big thank u

    why r they approving stem cells on newborns! for a non-threatening condition!

    re: ridor – im glad folks care about felix too. we all should

    re: someone bugging ya in FB – well if its really bad, u can consider “defriending” them. life is too short (and for some they aint even allowed to live as Deaf) to be dealing with nutters. re: the gov. of Fla – we have to TRY. that is the most important thing – that we DO something instead of just yapping, pointing the finger at how others should, or clackity clackity type away saying much ado about nothing …. signifying nothing

    we STAND

    stay focused and know of all the many – u have been VERY true to being Deaf so keep jumping at that sun pope mistress and know u r loved

    no need to argue with some folks – part of their arguing is just cuz u r willing to engage where as others wont give them the time of day

    love, love, love

    love ’em enuf to say – click and poof – u r not part of my space cuz im focus my eyes on the prize – social and economic justice

    much peace and love

    patti

  8. handeyes
    Jan 14, 2012 @ 16:21:06

    Dianrez has her thinking cap on – as always. Ya hoo and thank u for all ur good questions

    can u clarify when u write: “The ones selected must have become deaf after birth from meningitis, injury, or other external reasons.” is this ur assumption based on the fact that the experiment says it wont take genetically Deaf newborns and infants?

    reason i ask is because my thinking is:
    1. they dont want genetically Deaf babies cuz
    a. they hope to get to them before implantation / conception inutero or via amnio then abort
    (its already happening folks so dont go thinking im nutty – its the truth)
    b. my guess is the cord blood of the infant is just gonna be tainted and recirculating that thingy that makes those hair cells lie down and sleep as designed by mother nature to ensure true diversity on this planet so they dont want to use those

    note: i’m guessing they want to use the babies on blood cord not so much so it wont be considered invasive – it still is because of the method to put that stuff back in there and all the testing processes to measure any change is gonna be uncool but rather BECAUSE IT WILL ENSURE MORE COMPATIBILITY (if its an aborted fetuses stem cells u can hit “rejection” issues at a higher rate)

    2. they are using the universal newborn screening in the hospital right after the baby emerges into this world when the mom is pretty knocked out from giving birth and the dad or other mom or family members r in la la land at the wee thing being out and about to detect for “REFERRED” light going on as in FAILING of the early HEARing detection test and if that light goes off then they ask Mom (who is still probably very tired out) sign this so we can harvest our newborns cord blood to store so later “if you want” we can give her/him stem cell treatment

    now i could be WRONG – i really cant imagine how it is that they would have an 18 month old infants blood cord stem cells 18 month later if the wee thing BECAME Deaf later from illness or medication or accident

    so either they are harvesting everybodies’ blood cord without consent and storing or the Early Hearing test in the hospital is the portal for this brave new world

    i think they r just saying 6 weeks to 18 month so that the hospital and other hospitals will know that when the LIGHT GOES off – to get that cord blood

    notice one of the BIG players in the experiment – CORD BLOOD REGISTRY (R)

    we will see what more i learn

    if u did read somewhere that it was for babies who become Deaf before 18 month not those born Deaf – can u direct me to where u read that???

    3. i believe they have been doing stem cells on adults for a while – various side effects that are not so cool and the results are not GREAT but in some folks eyes anything is better than being Deaf

    4. of note is the AVT / LSL collaborators in this experiment and the PUSHING of it as if a medical necessity for the language acquisition window of 18 month

    SEEEEEEEEEEEEEEEEEEEEEEE how things are lining up folks

    and yes im pretty boiling about EHDI now

    disclaimer folks – i am not a doctor, geneticist, scientist, etc nor do i play one on TV so im just learning and yes waking up is hard to do

    biggest thanks dianrez – ya got me thinking big time – its looking like this study is really a call for these babies before they are even born or ones whose parents have already been hit up by the “professionals” to collect their cord blood at the BIRTH PRIOR to this study getting set up or its to collect them hence forth – wow talk about preMEDitation

    everybody now …. all together now…… WTF

    ohhhh i hope im totally wrong on this

    peace

    patti

  9. dianrez
    Jan 14, 2012 @ 20:25:05

    Stuff that sticks to my mind in reading generally don’t include cites, so I had to go back and spend time looking for this.

    http://www.cordblood.com/regenerative-medicine/form.asp?ref=hearingloss

    This is not what I saw before; what I saw was more clinically specific in what babies and what types of hearing loss it takes…I believe it was a research proposal and not a call for research subjects.

    You’ve added more ethical questions, good ones. Cord blood has been saved for quite a long time…at least 35 or 40 years now. Friends of mine who had a child with a neurological disorder told me of the existence of these banks in 1975 when I attended graduate school with them. I’m not sure of the conditions cord blood has been successfully used to treat, that could be another question to raise.

    Using native cells seems to be a way to avoid rejection issues and to jump start the idea that stem cells might be used to cure deafness by non-genetic causes. For me, the only issue is: DOES IT WORK 100% AND IS IT SAFE? Secondarily, consider that it may use up one’s limited supply of native stem cells and make them unavailable for more serious diseases such as diabetes or heart damage or Alzheimer’s later in life.

    Addressing the issue of aborting fetuses because they “probably” carry genetic deafness is a different ethical issue and deserves separate treatment. It is wrong for many reasons besides the issue of abortion itself. Education and change of public attitudes is the best preventative, i.e….Being Deaf is not a hindrance to effectiveness, productivity, happiness or fulfillment. Deaf people are independent and positive assets to society, etc.

  10. dianrez
    Jan 14, 2012 @ 20:30:55

    Wikipedia on cord blood: http://en.wikipedia.org/wiki/Cord_blood

  11. MZ
    Jan 14, 2012 @ 21:43:12

    fyi, the stem cell experiments have been conducted on animals for years, compiling countless data for the FDA to review. Then FDA will decide if the results are promising enough for the stem cell experiments to be tried on people, including babies. remember the cat sporting a cochlear implant? same concept.

    they always start with animal trials first.

  12. MZ
    Jan 14, 2012 @ 22:09:17

    the reason for the exclusion of deaf infants and children through genes from the stem cell transplantation. they are using the stem cells collected from the children’s placenta. these stem cells won’t help those deafened by genes as they still carry the deaf genes. for them to be effective with the deaf children, the stem cells need to have functional hearing genes, meaning the hearing genes must be engineered into their stem cells first. however, no genetic engineering is involved in this stem cell transplants. hence the reason for the inclusion of infants and children deafened by illness and injuries. their stem cells carry intact hearing genes. i hope that makes sense.

  13. MZ
    Jan 14, 2012 @ 22:20:47

    oh, one more thing. this isn’t new. FDA may be starting experimental trails now, but these stem cell experiments have already been done in other countries and they’ve already started on human subject. this came to my attention not too long ago as one college student majoring in music lost all her residual hearing. her parents sent her overseas, South Korea i think, where she received the transplantation. she regained all of her hearing in one ear and half in the other ear. this enabled her to continue her studies in music. whether this success rate is typical with other subjects or not, that i don’t know yet as i’ve not researched in this area.

  14. Dianrez
    Jan 15, 2012 @ 00:06:22

    MZ, I remember that case. A Texas woman with a progressive hearing loss regained some impressive hearing. Come to think of it, there have been no further reports of more successes since..however,.we should be hearing about them or at least about that one case and how the transplanted cells have fared since. I believe it was donor cells that she received, and that they were injected (directly into her inner ears in two or three treatments) in South Korea or Japan, because it would have been illegal to do it in USA.

    In this research, the cord blood would simply be transfused generally on the assumption the stem cells would then migrate to the cochleas. Somebody explain to me how the cells know where they are supposed to go, please.

  15. MZ
    Jan 15, 2012 @ 07:40:58

    I don’t know about the texas woman. this woman is from california and attends an university in arizona. the harvested stem cells were her own, not from a donor. here is the link to her case: http://www.reuters.com/article/2009/11/04/idUS117097+04-Nov-2009+PRN20091104

    it would be interesting to see the long term outcome. since her hearing loss resulted from an auto-immune disorder, the new hearing gain can eventually deteriorate likewise. there seems to be no effective treatment for the auto immune disorder.

  16. handeyes
    Jan 16, 2012 @ 02:34:45

    Dianrez and MZ

    thanks for ur comments and links and info – was busy yesterday and today but i have read them and still learning so thank u

    peace

    patti

  17. deafa
    Jan 17, 2012 @ 18:09:35

    I wondered about blood cord bank myself. It is expensive as it is, and I don’t think most know their child is deaf until it’s too late to do blood cord bank. Finding selection of deaf babies whose parents decided blood cord bank will very slim (or they knew they could have a deaf child because of disease they had).

  18. handeyes
    Jan 22, 2012 @ 03:08:07

    deafa – good point

    someone did ask the Stem Cell experiment folks – how would they have the blood cord already from the babies before learning or before the baby even becomes Deaf – they said – ohh some parents just have the blood cord harvested

    it isnt a generally DONE thing but that might be the push the CBR (r) is aiming for

    at $2,000 a pop to harvest and then a couple a $hundred annually to store – if the experiment can prove that the stem cell implanting doesnt cause any major harm – they could push for the blood cord collection and storing to become routine

    u wouldnt believe what is already routine and costing pretty pennies and some of it causing some harm but we’ll just sweep that nasty N under the carpet

    peace

    patti

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