IRSF Annual Appeal February 22
Grace and Tara featured in the International Rett Syndrome Foundation Annual Appeal
New treatment for Rett Syndrome February 9
Hi again,
Right after I sent the “Gracery List” email this afternoon, I received about 5 “Google Alerts” about a new treatment for Rett. Attached is one of them. The study must have just been released to the press. It certainly refreshes the wind in our sails once again and reassures me that the efforts are working and we need to work harder than ever to bring us not closer to the cure, but actually get us to the cure. We are actually moving into a new mindset of raising not only research dollars, but also money for treatment and later: the cure.
Headed to RI Hospital (Hasbro) tomorrow for a few days with Grace for some testing and treatment exploration for seizure stuff. I will be around later in the week to get back to you.
Thanks again and enjoy the exciting news…knowing that you are directly responsible for contributing to the search for a cure for Grace and all the girls in the world who suffer terribly from Rett Syndrome.
Love,
Tara
Study Suggests Possible Treatment for Neurological Disorder Rett Syndrome
Karly January 5
I’ve wanted to share Karly’s website with Race for Grace friends…this is a 23 year old girl with Rett who through technology and facilitated communication, can share her thoughts with the world about herself and Rett.
It’s absolutely amazing. I want you to learn more Grace and Karly and other girls with Rett Syndrome. Mental Retardation is not part of their disease. Dr. Andreas Rett always believed this. They are intellectually sound but trapped in a body with a brain that is so terribly broken and the worst part is they know it’s broken because they are smart. I remember when Grace understood everything I said when she was 2. She would do what I asked her to do, follow little commands and laugh at appropriate times when things were said in her presence, so I see more clearly now that yes, she is smart. My friend used to say that she thought Grace was one of those super intelligent kids that just don’t talk. Think Stephen Hawkins. If it wasn’t for technology, he’d be forgotten in a nursing home somewhere. It’s a disease of the body and movement with many medical complications but not of the intellect. In some ways, it’s more heartbreaking because I feel so sad for her to have to live knowing how disabled she really is. In other ways, it’s refreshing because now when I wonder if she undertands what I’m telling her, I just assume that she does and I keep on talking to her.
Why we Race for Grace May 31
Hi Everyone!
I am still coming down from the high of Race for Grace 2008 but after reading the quote below from Dr. Huda Zoghbi, I don’t want to come down too far. I want to continue with my momentum of raising faith, funds and hope for a cure for Rett Syndrome. Sometimes I forget how devastating it actually is because I live with it every single day. I wanted to share the quote with you all in hopes that it will drive you to also continue to Race for Grace in every way possible whether it be educating someone about it, sending someone to the www.theraceforgrace.com, or offering a moment of prayer for Grace and all the girls who suffer and struggle to live with Rett Syndrome.
The disease is indeed a mystery. Why God allows the girls to suffer is also a mystery. Nobody knows when the cure will be discovered. What I do know is that Saturday, May 23, 2008 was a tremendous outpouring of love, hope and generosity from friends, family and even tons of strangers who have now entered in the circle of Grace. People have called and written to tell me how much the day meant to them and their families and I am so thankful that the Reddingtons were not the only ones to walk away feeling such gratitude. Grace is truly a blessing. I have no doubt that God has a master plan for her and He won’t disappoint any of us in the end.
Thank you for all the generous donations, volunteer work, time and talents that you put gave so generously to the Race for Grace. More importantly, thank you for jumping onboard and being part of the journey and the Race for Grace. I hope it continues to be a part of your lives everyday as it is in mine.
“Rett syndrome is a devastating disease. Think about what it takes to function normally: You have to be coordinated, you must be able to think, you have to be able to communicate, and you need to move smoothly and with balance. The symptoms of other neurological diseases affect some of these functions but Rett syndrome affects them all.
It’s very hard not to be intrigued by this disease. We all are familiar with neurological diseases; I’m sure everyone has seen some one with epilepsy, or Parkinson’s disease, or bipolar disorder or schizophrenia. But when you see symptoms of all these diseases in one individual, you are struck by this. Rett syndrome is particularly heartbreaking because it develops after the child has already learned to walk, and perhaps even say a few words. To lose all that and gradually develop a symptom from almost every neurological disease in the book is quite mind boggling.”
Dr. Huda Y. Zoghbi
Professor in the departments of Pediatrics, Molecular and Human Genetics, Neurology and Neuroscience at Baylor College of Medicine.
Investigator at the Howard Hughes Medical Institute.
Source: http://www.hhmi.org/news/zoghbi20080530.html
God’s grace to you all…
Love,
Tara
Rett Syndrome 1986 September 15
A fascinating article back from 1986 when Rett Syndrome first hit to US medical books so to speak. (each page will open in a new window using Acrobat Reader, you may need to zoom or magnify to make the articles readable)
IRSA and RSRF Complete Merger June 20
Hello Everyone!
Now that you are all in the world of Rett I thought I’d share this exciting news http://www.rsrf.org/about_rsrf/1.5.27.html
It just brings us closer to a cure! Keep the prayers going up.
God Bless,
Tara & Family
Research shines light on Rett Syndrome February 10
Hi Friends!
Please click on the link to read this article from Boston. It is information that we NEVER expected. It has given us the hope that we prayed for and a reason to never give up and keep the faith. We believe God can do all things. Keep praying…look what your prayers have done so far…!!! Much love and faith, Tara, mother of Grace