Grace for Rett » Grace's Life with Rett Syndrome

Oh my GOSH!! A cure? {a little flipping out over here!}

The Rett Syndrome blogosphere is all ablaze this week with news of Jonathan Kipnis’ findings on bone marrow transplants as a treatment for Rett. And my hands are literally trembling as I type this. There are other far more advanced rettmombloggers out there who have written amazing posts about this already. I highly recommend you read this by Amy’s mum Catriona in which she says, “We can cope with hope without needing a timetable for a cure. It’s enough to know that the work is being done, and that the evidence suggests that Rett is a more tractable condition than anyone ever imagined.” And while folks like Catriona are being very sensible in not getting their hopes up unreasonably high, I am willing to admit that my hopes are up. Extremely up. Sky high up.

{The News}

So what’s the news? The news is that, according to Jonathan Kipnis’ research, Rett Syndrome appears to be treatable by way of bone marrow transplant. This is the official press release from the RSRT who funded the research and this is the paper published in Nature with the findings of the reasearch. We’ve been waiting about 2 years for this news. Every time I’ve met with others in the Rett community, we’ve been buzzing with the hope that ‘any day now’, Dr. Kipnis would publish his findings. Well, that day has come.

This is a brilliant video to explain the findings visually:

The next step is clinical trials. On that subject, Monica Coenraads, founder of the RSRT said, “We do know of a case in which a girl with Rett Syndrome who was treated for leukemia gained considerable communication skills after a bone marrow transplant, and was able to converse with her mother for the first time in their lives. RSRT is in the process of exploring bone marrow transplant as a treatment modality, with full awareness of the serious nature of such a trial.”

Jonathan Kipnis’ research has been being funded by the RSRT {Rett Syndrome Research Trust} which means YOU. This means my dad who ran the GirlPower2Cure half marathon at Disney last month and raised over $1500. Or my boys who sold their toys at church and raised £69.30. This means Neil Prosser who organized the hockey match last year. And Elaine whose dying wish it was to see Grace cured of Rett Syndrome.

Dot McQueen - March 21, 2012 - 11:20 am

Quite understandable how exciting this news must be for you and other Rett-smitten families. I hope and pray that the trials and continued research move along fast.



Sharon Cook - March 21, 2012 - 12:26 pm

The joy in your blog today just takes my breath away. Hope is a bird on wing … and it seems that for those who are dealing with Rett Syndrome … hope is becoming reality. Praise God for this researcher and for the funding being raised to continue it until every child who suffers with Retts will be cured.

Keep us, your photography followers, posted as to updates in this treatment.

“Give all your cares and worries to God, for He cares about you.” I Peter 5:7

Lea - March 21, 2012 - 12:54 pm

Wow! That is very promising! As a mother, I’m not sure I could help getting my hopes up either!

Heather - March 21, 2012 - 1:43 pm

Tears came to my eyes as I read this and pictured the mom who communicated with her daughter for the first time. Thank you for all you do, Elizabeth.

Janie Beaumont - March 22, 2012 - 10:14 pm

Oh my gosh !!!……as a mother of Olive with rett, i am flipping with you…. why isn’t everyone else though ! !…x x x

tommie jean duncan - March 24, 2012 - 2:14 am

My daughter, Lindsay, was diagnosed in 1988 and was examined by Dr. Andreas Rett in May of that year. She is 28 now.

I was so excited when they discovered the gene about 10 years ago and could then check her older sister to see if she was a carrier. Thank goodness she was “clear” and I am now an expectant “Nanna”.

I will be watching the news and following up with with Lindsay’s newrologists and endocrinologist to see what they can tell me.

Very exciting news and it does bring hope.

Bridget MacDonald - March 27, 2012 - 8:17 pm

I have to say I’m with YOU! I was completely freaking out, crying, wanting to share the information with the world, it was just another one of those HUGE, GIGANTIC pick me ups that I needed to get me to push just a little bit harder. I know others were being cautious and still others very skeptical but nope, not me, I like to rejoice! 🙂 BTW your Grace is BEAUTIFUL! My youngest is Grace, her older sister Annie has Rett – R168X

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