22q/VCFS - GOOGLE IT!!!  Help improve and save lives.
  • Petitioned Tennessee Governor

This petition was delivered to:

Tennessee Governor
Tennessee State House
U.S. Senate
Tennessee State Senate
U.S. House of Representatives

22q/VCFS - GOOGLE IT!!! Help improve and save lives.

    1. Teresa Napierala Pyle
    2. Petition by

      Teresa Napierala Pyle

      Manchester, TN

Meet Zakry, (pictured with his Mom on petition page)  he was born by emergency C Section at a mere two pounds. He was born with 22q and had severe health issues that have continued through the following 20 years. He was not diagnosed with 22q until he was 10 years old. Because of this,he has had an enormous amount of unnecessary suffering as well as his parents. It is time that 22q become known by all doctors!!! These kiddos cannot stand to suffer anymore than they already do, nor can their parents.     Please sign the petition requesting 22q/VCFS receive more education and attention in medical and nursing schools, and  special education majors also receive more information about it while in school. What is 22q/VCFS?   It is a micro deletion of the 22nd chromosome and there are 40 genes  missing in each case.  Therefore, each system in the body is in danger of being affected. It occurs in 1/2000 to 1/4000 live births. There is over 180 anomalies and characteristics associated with this syndrome and many are life threatening without proper early intervention. Proper teaching of these kids in school is imperative as these kids are often labeled retarded and then treated as such and don't reach their full potential. They learn very differently than the average person, however they DO learn with the proper attention. Some people have not been diagnosed for years and lived a life of medical misdiagnosis, incorrect medical treatment and therapy, that if they had the proper treatment it could have saved them from so much pain and even death. Ninety percent of the time it occurs for no reason at all. It could happen to YOUR unborn children or grandchildren etc. For more information please see the VCFSEF.org page (Click on fact sheet before entering site to see all of the anomalies and characteristics associated with the syndrome). Or go to the DempsterFamilyFoundation.org  These kids may suffer through surgery after surgery and do have  life long struggles that don't have to be so incredibly difficult with proper EARLY intervention. 22q/VCFS - GOOGLE IT!!!!!!

Recent signatures

    News

    1. WE NEED MORE SIGNATURES!!!!!

      Teresa Napierala Pyle
      Petition Organizer

      Thanks to all of you who have signed. Please remind your friends again if they have not signed. We need to help these kids!!! We just lost two more kiddos with 22q11. It has to stop. Our med and ed communities NEED to be more aware!!!! Thank you for all your help!!!

    2. We are picking up again......781 signatures.....

      Teresa Napierala Pyle
      Petition Organizer

      Thank you so much for sharing the info to sign the petition. It may not happen fast, but we will get to 100,000 signatures!!!!!!

    3. Reached 750 signatures
    4. Can you believe we have jumped to 730 signatures!!!!???

      Teresa Napierala Pyle
      Petition Organizer

      We are doing great......Keep sharing and lets break one thousand!!!!

    5. We are picking up again. Up to 690!!

      Teresa Napierala Pyle
      Petition Organizer

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    6. 679 is a great number of signatures.

      Teresa Napierala Pyle
      Petition Organizer

      I am so happy to have gained 679 signatures......who is going to help us get to 1,000!!??? Who else can you share this with? I bet there are people you haven't considered or thought of yet! We

    7. I just attended a 22q11.2 conference in Cincinnati, OH. I learned alot!!

      Teresa Napierala Pyle
      Petition Organizer

      We are at a total standstill! We can't lose our momentum now.....we have so much further to go........keep emailing, twittering, facebooking and any other ideas you have to spread the word to get more signatures!! We can do this!!!

    8. We are at 636 signatures!!

      Teresa Napierala Pyle
      Petition Organizer

      Thank you for all the sharing of and forwarding the petition. It is really great. I am attending a conference this weekend in OH about 22q11.2. Hopefully I can encourage some more people to sign! I thank all of you for the time you are taking to help this every important cause!

    9. I need to tell you all about my son Zakry who has 22q11.2

      Teresa Napierala Pyle
      Petition Organizer

      Zak's story. In a nutshell. He is 20 years old and has 22q11.2. He was not diagnosed until he was 10 years old. We went thru so many misdiagnoses and under-diagnosis. It was so horrible. He has had 19 major and minor sugeries to keep him alive and we enjoy every moment of time we have with him. If he had been diagnosed at birth, we would have been so much better off. Thank you all for signing the petiton...

    10. I changed the name of the petition.

      Teresa Napierala Pyle
      Petition Organizer

      Wow!! I changed the name of the petition and that may have helped it get more recognition from Changel.org OR everyone is really busting their butts to get it out there. I am so happy and appreciative!! So fantastic to be over 600 signatures!!!

    11. We are at a standstill...

      Teresa Napierala Pyle
      Petition Organizer

      I put that we were going for 500K signatures, but 100K would be nice!! Keep sharing and and forwarding thru email, FB, Twitter, whatever you can do is greatly appreciated. This can't be done without the kindness of your friends and even total strangers. Thank you so much!!

    12. We have almost reached 600...Let's go for 1,000 now!! We can do this!!

      Teresa Napierala Pyle
      Petition Organizer

      Thank you for all your efforts to sign and forward petition. I can't tell you how much the 22q community appreciates it!!

      " Words do two things: They provide food for the mind and create light for understanding and awareness" - Jim Rohn

      Let us shine on and spread the word about 22 Q.

      I got a newspaper to publish an article on Zak and 22q11.2......hopefully it will get us some more signatures. You all are great!! 22q11.2 - What can YOU do?

    13. We broke 500 as we are almost at 560!!

      Teresa Napierala Pyle
      Petition Organizer

      Wow!! Go Go Go! We are getting up there.....keep the momentum going. Your creativity in reaching people is wonderful. How many of you can get in touch with your local media, letter to the editor, twitter, etc..?....

    14. Reached 500 signatures
    15. We are slowing down on signatures........let's get more creative!!!!

      Teresa Napierala Pyle
      Petition Organizer

      We are slowing down on signatures.....what are come creative ways you can reach your media to get the word out to more people?
      This cause is so important, as we all know....we can't lose momentum now. We have almost reached 500 signatures! 22q What can YOU do?

    16. Reached 250 signatures
    17. We are making some headway! Great! Please keep forwarding for signatures!

      Teresa Napierala Pyle
      Petition Organizer

      If you have any suggestions of who else I can contact for more signatures, (organizations etc), please email me at pyletnt@msn.com ....Thank you so much for helping us meet our cause!! We only have one shot at this and need as many signatures in as short amount of time that we can get. You all are wonderful!!!!!!!!

      MSN.com

      MSN is Microsoft's portal, offering news, sports, money, games, videos, entertainment & celebrity gossip, weather, shopping and more great content, as well as Windows Live services such as Skype, Outlook.com, Hotmail and Messenger.

    18. Reached 100 signatures

    Supporters

    Reasons for signing

    • Yvette Rand MACUNGIE, PA
      • 6 months ago

      Dear friend's granddaughter has been diagnosed. Please help'

      REPORT THIS COMMENT:
    • Laura Lopez CHERRY HILL, NJ
      • 6 months ago

      My daughter was diagnosed at three weeks old with 22q distal deletion syndrome. Luckily the geneticist in the hospital in which she was born was knowledgable about 22q. Unfortunately, most of my daughter's doctors, therapists, and teachers have never heard of this syndrome until I explain it to them.

      REPORT THIS COMMENT:
    • Jill Casey CHERRY HILL, NJ
      • 6 months ago

      My granddaughter was diagnosed with 22Q distal deletion syndrome at 3 weeks.

      REPORT THIS COMMENT:
    • Ted Jordan LA VERGNE, TN
      • 6 months ago

      My personal friend's son has been affected by this. We need to all have a place in our hearts for these kids.

      REPORT THIS COMMENT:
    • deirdre derkx PORT HOPE, CANADA
      • 7 months ago

      My son is VCFS.. Anyone with any family or friends need to be aware of this.. especially for the educational system.

      REPORT THIS COMMENT:

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