Rubinstein-Taybi Syndrome

Contact Us

My daughter is Lisa Wardlow and her first page on this site was at 6 years old.  She is now in her 20′s and has a facebook page! –Diane Page

Our Address

158 S Hassett Cir

Mesa, AZ 85208

T: 480-432-3154

W: http://www.rubinstein-taybi.org and http://www.rubinstein-taybi.com
E:  diane@rubinstein-taybi.org

20 Responses to Contact Us

  • can you please add me to any email list newsletter/subscriptions? Thank you!

  • Hi my name is Claudio Novoa .. I lived and work in indianspolis indiana .. an a race car mechanic …
    My nephew Bastian ..is 14 year old and born with RTS.. He live with my sister and parents in Chile .. Vslparaiso .. My sister is a Fly attended .. LAN .. So she fly 3 times a month to Eeuu ..
    Bastian when he was young was 2-3-4-5 year old was a almost normal kid with RTS.. When to special schools .. He don’t talk ..star walk very late .. He Just make noises ..don’t talk .. But he understand everything .. When he born have a HEaRT ciruge .. He is very Hiper kid .. Very good boy .. Every body love him .. And in the school is very popular guy ..
    Now hi is 14 year old .. And since 3 -4 year ago he is been sometime very aggressive with my parents and sister .. And the problem that in chile this Sindrome .. Not to many doctors know
    about it.. They given differents pills every year to trian Relax him .. But now that he it’s getting big and old .. This aggressive thing it’s been more frecuents ..
    I saw you pag and Fundation .. And my question is if is any change to bring
    Bastian to Eeuu and be see for doctors here with more experience and maybe can give to him better pills or something ..to make his life better and better life to my family ..
    I hope you can help us ..

    Thank very much for you time ..

    Claudio Novoa …954.3261404 cell

    Indianapolis Indiana ..

    • Hola claudio mi nombre es barbara vivo en miami florida yo tengo una hija con rts tambien estoy teniendo muchos problemas con dlla y su comportamiento me gustaria comunicarme con ustds y podriamos intercanbiar imformacion para ayudarnos mi #305 767-5135 mi correo es ninococo123@gmail.com ojala podamos comunicarnos gracias y suerte

  • Hello i am trying to get in contact with other parents with children with Rubin Stein Taybia Syndrome, my little boy is 3 and has just been diagnosed , we havent been given much information just the title which i am finding hard as nobody has any answers for me as they dont seem to know there selves many thanks
    I am in Endland

    • Hi my name is Barbara And I do have a child with rubinstein-taybi syndrome I live in Miami Florida My daughter’s name is Vianca Zuniga And she’s 22 year old.But the ankle looks like a 10 year old ,I would like to get in touch With Families that are going through the same As me.S been very Hard For me to find another Families At this moment I’m very desperate ,Yes I’m having a lot of problem with my daughter Behavior With medication Like you I love my little girl ,I want Two helper but I don’t know how ,From the bottom of my heart Please get in touch with me Maybe someone who has and share the same problem Have something to To tell me so I can learn and whatever I have knowledge And all these years Can help you also Please let’s get in touch My phone number is 305 767-5135 God bless you

    • Hi Victoria,
      I don’t know who all has contacted you from this post. My name is Tammie and I have a son Cody who is 16 with RTS. Diagnosis is tough and tougher when your questions don’t turn up any answers. You can contact me anytime. tammie_kent@hotmail.com

    • Hello Victoria,

      I have just seen your post from last year so hopefully you have found some answers to your questions. We have a son who is just coming up to 3 yrs old who was diagnosed at 16mths. It was very difficult when Thomas was first diagnosed as we just didn’t know where to get answers and we were also quite fearful of what we may find.

      Thankfully we have found another family locally in the same situation and speaking to them has been a tremendous comfort as well as being very informative. We felt really unsure about talking to other people at first but it has been really useful.

      We are also based in the UK so if there is anything you want to ask, although we can’t guarantee an answer, we’d be more than happy to help.

      All the very best,

      Steve.

  • Hello!
    can you please add me to any email list newsletter/subscriptions? My son was diagnosed w RTS. Thank you!

    Jane

  • Por fabor nesecito alluda para mi hijita quisiera saver si hay algun grupo de ayuda para rts aqui en la florida

  • On page: http://rubinstein-taybi.com/medical-7/
    An error message on the link:
    http://www.healthwise.org/kbase/nord/nord461htm

    Hope all is well with you and your family.

    • Thanks Joy! I’ve removed the link completely because it looks like the website has now become a subscription website and I don’t have access to the article.

  • MY NAME IS RYAN THERESA I WAS BORN WITH RTS BY FROM THE TIME I WAS IN elementary SCHOOL TILL THE TIME I GREW UP THERE WAS A GIRL THAT LOOKED JUST LIKE ME I SOON FOUND OUT SHE WAS MY TWIN BOTH ME AND KATHREN WAS INDENTICAL TWINS WE WERE’NT BORN AT THE SAME TIME BUT WE LOOK ALIKE WE WERE ALSO BORN WITH RTS WE CALL EACH-OTHER SISTERS I WANTED TO KNOW WHAT IT FELT LIKE TO BE A BIG SISTER BOTH KATHREN AND I HAVE A STRONG RELATIONSHIP SHE IS SHORTER THEN I AM AND I’M TALLER THEN SHE IS YONGER THEN I AM SHE IS JUST A LITTLE GIRL I’M A FULL GROWN ADULT I’M IN ENGAGED TO MY WONDERFUL LOVING GENTLE FIANCE HUSEIN HASEN IBRAHIM WE’VE BEEN TOGETHER FOR 2-3 YEARS I HAVE LONG DARK BROWN HAIR SHE HAS SHORT

  • Who do I contact to update my son’s page on the Our Pages?

  • Hi,
    My name is Sara and I am a sister to a 35 year old with RTS. My brother has had a relatively good life considering some of the health problems that he could have. He has had many falls over the years that has left him with bones and joints that have not healed properly. When he was very young he required eye surgery to correct his crossed eyes. MANY ear infections have left him needing hearing aids. However, we are so grateful that he has healthy organs and is over all fun to be around.
    My question is … as he ages his temper seems to be getting the best of him. He does have limited speech, but has always been good about getting his point across. I’m not sure if it is the communication barrier that is angering him or if there is something else RTS related. He has recently lost his job of 16 years do to his out bursts. Lucky for him we have a wonderful day service program in our community that he has been with since graduating high school. I think boredom would only increase his issues. Is there anyone with a similar problem? Any suggestions as to how to get this a little more under control? He is on a low dose of anti-anxiety (buspirone). Could this be having a reverse affect or should his dosage be increased?

    Any help would be greatly appreciated.

  • Hi, this is Vancie. My daughter is suspected to have RTS. We’re from Hong Kong. Would you please any email list newsletter/subscriptions? I found it difficult to get more info of RTS as it’s rare here. Thanks a lot!

    Vancie Yick

  • yo tengo mi sobrino jamil de 6 años que tiene el síndrome de rubinstein taybi y que el tiene tiene 6 cálculos en el coledoco y en el conducto de wirson y que el se encuentra hospitalizado en el hospital san bartolome de Perú con el diagnóstico de pancreatitis .
    Necesito ayuda ya que el se encuentra hospitalizado hace 3meses
    La razón es que no pueden realizarse la cepre por lo que no encuentran la papila y que se encuentra con una desnutrición crónica necesitamos de su ayuda para poder operalo ya que en Perú no hay un cirujano gastroenterologo especializado y que para mi sobrino es de mayor urgencia
    Perú
    Número:993330749 y 984911398

  • Good afternoon, I’m from Colombia, I have a 4 months old baby and 15 days ago she was diagnosed with RTS, i am a nutritionist and I am very concerned about controlling the growth and development of my baby, I know there are special tables for weight and size control.
    I would be very grateful if you could help me find it.

  • Hi, my name is Jessica and my daughter, Abby was diagnosed with RTS at 3 weeks of age) has been on seizure meds for awhile. For the last 4 months Abby’s Bilirubin has been increasing and she has become jaundice. Has anyone else had this problem or problems with liver? Thanks!

  • Hello I am a mom to a two year old boy who has many characteristics of rts..i have so many questions will he ever be able to talk,walk?? I’m getting him early intervention now too.. we are in New Jersey are they any organization here that deals with children like him what do about his painful toes? And the list goes on please help? Especially with aggressive behavior parents please help I love my son and want what’s best

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