Tag Archives: Syndrome Awareness

Question?: Rett Syndrome

John asks…

Why are diseases that are found to be curable/reversible in mice?

not in humans?

Serious answers only please.

Asking b/c Rett Syndrome ( a devastating neurological disorder) was completely reversed in mice like 3 years ao & I don’t understand why the same basic concepts that made that possible can’t be used in living humans suffering from this horrible disease

OCTOBER IS RETT SYNDROME AWARENESS MONTH
Care Today-Cure tommorow !

admin answers:

Great question and thanks for posting about Rett Syndrome and helping raise awareness!

In the experiments on mice (1 1/2 yr ago) they silenced the MECP2 in the mice (with insertion of a “stop cassette”), and then un-silenced it to see if the effects would be permanent like they believed they would be. So the mice didn’t actually have Rett Syndrome and in RS there is no “stop cassette” built into it to turn on again. So the real outcome of this study showed that once a cure/treatment is found, these girls could possibly be normal again and not neurologically damaged permanently…this is amazing in itself but doesn’t mean we are any closer to a cure.

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Question?: Rett Syndrome Awareness Month

Donald asks…

If they are gong to make vaccines mandatory dont you think?

Okay I understand why (even if I may not agree) they may make some vaccines mandatory BUT if they are going to do this why wouldn’t they ALSO make blood/allergy testing & mitochondrial testing mandatory too!!!

Too many times I’ve read stories about kids allergic to ingredients in vaccines , i.e. eggs, msg, gluten, etc. &/or someone had a a prior mitochondrial defect that the vaccine just “pushed in over the edge” & now said child is autistic, regressing,

Instead of playing russian roulette with our kids why not mandate these relatively routine tests before giving these kids all the same vaccine as if all these kids are made the same exact way. Everyone is different & they should realize that!!!!

Now Im sure someone will say the cost of this doesn’t pay, but with the statistics saying 1 in 150 kids is autistic do you know how much it costs to pay for disabled kids for the rest of their life!?!?!?! & besides that how can you put a price on a a humans life like that!?!?!

OCTOBER IS RETT SYNDROME AWARENESS MONTH!!!
WOW!
I never said vaccines DID cause Autism (even if i personally belive maybe there mihgt be a link !) I never said that anywhere in this question

MY QUESTION WAS wouldn’t you want to take that extra step/testing just on the off chance that maybe just maybe all these vaccines have something to do with rising autism rates & by doing prior testing at least you will have known in your heart that you did all you could to keep your child safe rather then just be lead blindly by money making pharmacuticals pushing this years magical cure?
Also I just read a VERY sad article about a 5 year old girl from NJ who died from the flu vaccine & that NJ is making it mandatory to get this ages 5-18yrs once a year. Now Im not saying the vaccine itself is what caused this -chances are there was some underlying problem already existing (the article did not give further details) but that is exactly why I am asking this question. Shouldn’t they test for underlying potential problems & then asses the situation from there whether or not administering the vaccine has more harmful or good outcome

admin answers:

I agree they should test for those things but not all will show up.

I believe in a parents right to do “what they think is best” for their child and do not think the government should mandate vaccinations at all.

Dr. Diagnonsense: The writer did not say it was proven but rather opened a discussion on the subject. Much has been written on this subject and the effects of vaccinations on children (most of whom could be found by the testing indicated.)

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Question?: Rett Syndrome Awareness Month

Lizzie asks…

does anybody remember these kind of books?

Hi!

Just wondering if anyone rememebrs and/or knows what these kind of books are called. Generally you would start the first chapter & at the end it would say something like

if you want to go into the woods go to page 5
if you want to go into the car go to page 34

so on & so on & dependig on which page you flipped to the story would take you in all different dirrections & you could read the same book like 20 times with like 6 different alternative endings

anybody…anybody!!

thanks =)

OCTOBER IS RETT SYNDROME AWARENESS MONTH!

admin answers:

Hell Yeah!! Which ways, or time machines…
I used to love those, but sometimes I would flip to check and cheat.
Don’t see them any more, but i loved them as a child, thought they were great.

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Question?: Rett Syndrome Awareness Month

Chris asks…

Would you be more inclined to go to a salon or something if?

they offered a play area for babies/toddlers
Just wondering? I would, Usually I can sneak away to get my nails, hair, whatever done while my husband is home with her, but sometimes it just doesn’t work out b/c of our work hours.
I was thinking it’d be nice if someone would open a salon that had a kiddie corner of some sort so you could relax & get what you need done even with your kids around =)

October is Rett Syndrome Awareness Month! Care today-Cure Tomorrow!

admin answers:

We had a full service salon around here that used have a kids area. It was in an enclosed room with a large window looking into the salon so the kids could see their parents. There was an employee who oversaw the kids to make sure they didn’t get out of control or stray away. They had to charge a bit more because of insurance and the extra employees so the cheaper franchised businesses put them out of business. It was actually a great idea and would probably have done really well in a larger town.

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Question?: Rett Syndrome Awareness Month

Helen asks…

Why are diseases that are found to be curable/reversible in mice?

Serious answers only please.

Asking b/c Rett Syndrome ( a devastating neurological disorder) was completely reversed in mice like 3 years ao & I don’t understand why the same basic concepts that made that possible can’t be used in living humans suffering from this horrible disease

OCTOBER IS RETT SYNDROME AWARENESS MONTH
Care Today-Cure tommorow !
I meant to write : Why are diseases that are found to be curable/reversible in mice not curable in Humans

admin answers:

Partly because treatments which work on mice models do not always work on humans, since we are obviously not the same animals. Also, there is a big problem with getting clearance to use a treatment on humans. It has to pass so many types of rules and regulations, and then it can be used in clinical trials. Then there has to be placebo groups studied and so on and so on. Then it has to go through more rules and regulations. Salk said that if he were to submit his vaccine to the powers that be today, the cure would still be tied up in paperwork and obstacles.

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Question?: Rett Syndrome Awareness Month

Laura asks…

Why are diseases that are found to be curable/reversible in mice?

Serious answers only please.

Asking b/c Rett Syndrome ( a devastating neurological disorder) was completely reversed in mice like 3 years ao & I don’t understand why the same basic concepts that made that possible can’t be used in living humans suffering from this horrible disease

OCTOBER IS RETT SYNDROME AWARENESS MONTH
Care Today-Cure tommorow !
I meant to write : Why are diseases that are found to be curable/reversible in mice not curable in Humans

admin answers:

Liberalism is currently curable with large amounts of knowledge in most mammals.

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Question?: Rett Syndrome Awareness Month

Ruth asks…

Just a Reminder-Please Read?

October Is Rett Syndrome Awareness Month

I know this isn’t really a question, but being that there are alot of parents on Y/A I really just wanted to bring it to everyones attention
If you are interested in learning more please take the time to follow these links
http://www.rettsyndrome.org/
http://www.ninds.nih.gov/disorders/rett/…

If nothing else please pray for a cure for these beautiful silent angles & their families

thanks you

admin answers:

!

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Question?: Rett Syndrome Awareness Month

James asks…

Please read & pass along?

October Is Rett Syndrome Awareness Month

I know this isn’t really a question, but being that there are alot of parents on Y/A I really just wanted to bring it to everyones attention

What is Rett Syndrome:

Rett syndrome is a neurological and developmental disorder that mostly occurs in females. Infants with Rett syndrome seem to grow and develop normally at first (first 6-18 months) , but then stop developing and lose previous skills and abilities.
For instance, they stop talking even though they used to say certain words. (95% can’t speak & those who can only say one or two words) They lose their ability to walk properly. (over 50% are wheelchair bound) They stop using their hands to do things and often develop stereotyped hand movements, such as wringing, clapping, or patting their hands, making something as simple as playing with their toys practically impossible & signing for communication also impossible.

If you are interested in learning more please take the time to follow these links
http://www.rettsyndrome.org/
http://www.ninds.nih.gov/disorders/rett/…
http://www.nichd.nih.gov/health/topics/r…

or go to Youtube & type in Rett Syndrome to see first hand what this devastating disease does to these innocent kids =(

If nothing else please pray for a cure for these beautiful silent angles & their families

thanks you
* not trying to take away from Breast cancer awareness-they can share the month! Also with breast cancer the rate of surviving is very high-thanks to in large part research & awareness
Thats all I ask for is awareness & hopefully a cure =)

admin answers:

I thought it was breast cancer awareness month

but thanks

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Question?: Rett Syndrome Awareness Month

Mary asks…

thinking about starting a fundraiser?

Hi All!
October is Rett Syndrome Awareness Month & I wanted to get involved in starting a fundraiser for a cure. Like a walk-a-thon or a stroll-a-thon or something
Anyhoo, I dont even know where to begin with that so does anybody have any ideas or had helped do a fundraiser?

thanks =)

admin answers:

There is an International Rett Syndrome Organization, so I would start there first to see if they already have something in your area. If they don’t, you could contact them to see what you would need to do to get a fundraiser started.

Http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=422&Itemid=601

Good Luck.

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