Rubinstein-Taybi Syndrome

Resources

Special Friends Foundation

The Special Friends Foundation has made arrangements with the medical center in Cincinnati for reduced rates on all medical treatments and diagnoses related to RTS.
This may be more beneficial to new families that need all the testing done-they can do it all in one place.
We would ultimately like to set up several centers around the country with similar arrangements so that it will be more convenient geographically for the families.
The foundation will pay for travel and lodging expenses for those families that need access to quality medical care.


Chris Garavente
The Special Friends Foundation
C/O Chris Garavente
120 Shawnee Path
Millington, N.J. 07046
908-413-5027

cgaravente@msn.com

Michelle Farrell
The Special Friends Foundation
C/O Michelle Farrell
PO Box 313
Windham, NH 03087
866-316-90290

mzfarrell@aol.com

To donate to Special Friends Foundation visit their website at specialfriends.org

4 Responses to Resources

  • My son Jason was diagnosed with RTS by a genetist in the 1980s at Downstate Medical Center in Brooklyn NY. She took his DNA to a database in Washington D.C. When she came back she looked at his feet and hands , wrote Rubienstien Taby Syndrome on a piece of paper and handed it to me. That is all I knew about RTS until about 7 to 10 years ago when I found this site. Jason is now 32 years old and has many of the classic characteristics of an RTS individual. I wished Internet or even a library with information was available years ago. Now the guilt because I didn’t know what caused all of his characteristics has been lifted. Microcephalic, Ptosis, 1 kidney, ear infections, constipation, walked at about 21/2, talked later, reads at elementary level, hairy (but I come from a very hairy family), beak like nose, sublingual cleft palate, crowded teeth, one front tooth, scoliosis, awkward gait, low weight since about 2. 1/2 years old, very loving and sensitive ( when is was younger). He is still loving and is doing well at 32 years. Thsnk you for having this site to share. Best. Carmen.

    • Thank you Carmen. My daughter was born 23 years ago and I started adding information to the website when she was 6. I was just handed a one page piece of paper with Lisa’s diagnosis so I completely understand how you felt. I had to go straight to the library to look up certain terms on the paper because I didn’t know what they meant. Somewhere along there I did find Lorrie Baxter’s information, she is the head of the USA Parent’s Group and she was very helpful. I’m happy to hear that Jason is doing well!
      I hope you also saw this information on the site and you’ll consider joining because it would be wonderful to have your experience as part of the group:

      RTS Email LIST
      An e-mailing list allows everyone on the subscriber list to share e-mail messages automatically. When a message is sent to the RTS E-Mailing List, all subscribers receive a copy. Responses can be made privately or to the group. Basically, it’s a group discussion via e-mail. There are no fees to subscribe.

      Please contact Janet Estes, RTS List Owner/Administrator at janetestes@telus.net

      Diane (Lisa Wardlow’s mom)

  • I feel very guilty to say that after 11 years; I am just now eager and anxious to start searching and wanting the information about RTS… When my son Xavier was diagnosed , I was given a packet about it; but was told not to go on the websites because of course it gives you all the worse cases.. I was a young mother (18) not even knowing how to take care of myself let alone a baby with special needs. My son has been in therapy for awhile now making progress. A very loving individual that knows & meets no stranger (frustrating @ times :() !!!! We’ve been through it all and back. Just the other day I finally got the courage to go GOOGLE and search RTS. Reading it and remembering everything that we have been through thus far these past 11 years just brung goose bumps.. It detailed him down to the “T”… I used to get overwhelmed and knowing from my faith to never question God; because he has the master plan and purpose for us all. I love my son with all of me and want to make the right decisions for him. After 11 years I still dont know the next step sometimes to take. But I guess that is where my faith in God comes in; because he has never failed us yet. With that being said, I would love to obtain more information about our children with RTS. PLEASE send your blessings and information this way!!!
    Be Blessed, Elizabeth

    • Hello everyone, Im Nancy and My sister Donna has RTS. She is 46 years old. I guess you could say she is a poster child for RTS. She has just about every characturistic there is. Only thing is that she is mildly retarded, she talks, walks, sings and has temper tantrums at 46. She has the mindset of a rebellious teenager. There are many things that I and My older sister need to know about the aging RTS study. We dont know what to expect from her as she gets older. Like when is she going to go through menopause, is she going to loose eyesight, what will her memory be like. We have no clue. We feel like she is going to outlive us and there will be no one to take care of her. We share responsibility of caring for her. If I could help with some info for you, you can email me. There is a guilt and anger going on with my sister and I. But now that I realize that this was a genetic issue and no fault of our mother while she was pregnant, then I can not say I blam her for what has happened. And now that she is gone, the family or My sister and I are left to care for her. I have one child of my own but also have Donna who basically is another child. She does things on her own but you have to go behind her and makes sure she does a good job or if she does it at all. Its just extra work. I knew at the age of 14, that I would be the one to take care of her and at that age, I felt I would have no adult life. that is where the guilt comes in. Hope I can shed some light for you. Email me if you need answers.

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