RETT SYNDROME RESEARCH TRUST WEBSITE
A video presentation by Monica Coenraads
On June 28, 2009 the Rett Syndrome Center at The Children’s Hospital at Montefiore in the Bronx hosted a Parent Gathering. The Director of the Center, Dr. Aleksandra Djukic, warmly welcomed the audience and introduced the first of what will be quarterly Gatherings. Dr. Djukic introduced R.E.T.T. (Rethink Education, Therapy & Technology) an engaged group of parents who have designed a survey to gather information to better assess what programs, techniques and settings are most effective for educating individuals with Rett Syndrome. Darcy Minsky followed with some IEP tips to get next year’s educational year off to a good start. The next Gathering will take place on September 27th.
I spoke about an issue that is dear to the heart of anyone who loves a child with Rett Syndrome: How do we get to a cure? The presentation, which is about an hour in length, highlights the key research discoveries of the last decade and lays out the current thinking on treatment/cure approaches in easy to understand language. The presentation is divided into four sections:
• Genetics of Rett Syndrome
• Functions of MECP2
• Reversal
• Treatments and Cures
If you are the parent, relative or friend of a child with Rett Syndrome, I hope this video will give you a glimpse of the excitement that the scientific community feels about the possibilities that lie ahead for our children.
I welcome your thoughts and questions. I can be reached at monica@rsrt.org.
11 comments
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July 29, 2009 at 12:31 am
jill johnson
Thank you – you have clarified many points and introduced us to some new ones. We are really pleased to have such a group as RSRT working for our daughters.
July 29, 2009 at 8:42 am
cari dasen
Great presentation!
thank you, Monica.
July 29, 2009 at 9:35 am
Kathy Hunter
Monica, thank you so much for providing this basic and very necessary understanding of research and discovery in Rett syndrome. Your continued dedication and persistence in the pursuit of treatments and cures is deeply appreciated and applauded by those of us who love someone with Rett syndrome. I encourage everyone to support the outstanding efforts of the RSRT. Keep up the good work!
Kathy Hunter
Founder, International Rett Syndrome Association
Author, The Rett Syndrome Handbook I and II
July 29, 2009 at 7:45 pm
Judy Fry
Monica,
Bravo! I was mesmerized. You continue to amaze and delight me with your perseverance. Thanks to you I continue to hope for a MIRACLE…….
July 29, 2009 at 10:16 pm
Beth Reilly
Wow! Thank you for the wonderful information. You give us hope for our daughters! Thank you, Monica and the RSRT!
July 31, 2009 at 12:20 am
Susan Strelecki
Thank you-Monica. Thank you for making this science easier to grasp, comprehend for the layman parent/Mom. I am sharing this link with family and curious friends who all long for a cure for our daughters and now our sons…… We need to stop this disease, one generation is enough…. please, please lets cure, stop Rett’s. I am looking forward to learning more, again thank you for posting this. Kindly, Diana’s Mom ( atypical R294X 17.5 yrs)
July 31, 2009 at 8:00 am
Irene Gladstone
Monica,
Thank you so much for all that you do for our girls.
Watching your presentation was the most worthwhile hour I have spent in a long time.
July 31, 2009 at 8:13 pm
Carl Raso
Fantastic……Monica it is a ReTT Syndrome Update. You are truely amazing An excellent lecture by an excellent speaker. Reminds me of my first Kathy Hunter lecture. Thank you
September 8, 2009 at 4:01 pm
paul
thanks for taking the time to explain retts syndrome we have a 5 year old beautifull girl with MECP2 i learnt more today in 1 hour than the last 3 and a half years
January 15, 2010 at 8:41 pm
Menchu Roman
thanks for all, Monica. we need you for understand the rett symdrome, becouse you are the conection with science, doctor, therapy every thing around the wolrd. Mil gracias Monica y ten fuerzas no decaigas en tu lucha que es la de muchas madres.
January 26, 2010 at 5:16 pm
Juan
Monica,
Fantastic translation to Spanish. Well done!
Best regards from España (Spain)