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  • Category: Support
  • Founded: Feb 14, 1999
  • Language: English
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#104381 From: Wendy Bauer <wbauermitotony@...>
Date: Thu Apr 12, 2012 6:45 pm
Subject: update on Tony
wbauermitotony
Send Email Send Email
 
 We went to the Dr.'s today, he is dehydrated, he has to drink 4 oz every hour.  he has fluid and pressure on his left side that can go to sinus and ear infection, and the little congestion in his chest can also go to pnemonia.  So we go back monday to see if the fluid has gone down or what.  With his fever we just want to make sure that it does not get worse or that Tony will go down hill.  If symptoms progress before monday than we are to go back to the ER.  I am hoping for him to get better and no more illnesses after this one.
Wendy S. Bauer Indiana
Mom to Tony
9p-deletion
Mitochondrial disorder
Many other diagnosis
Mom to Erica
Mastocytosis
 

#104382 From: amy witonsky <amywitonsky@...>
Date: Tue Apr 17, 2012 1:43 am
Subject: birthday card for my nephew
treetarted
Send Email Send Email
 
Hi,

I don't often post/email but I have a favor to ask.  I am wondering if everyone can please send my nephew a birthday card, he is turning 3.  My sister is a single mom and she is on a limited income.  Her son has been having a hard time lately with mito issues and i know it would make his day if he received some birthday cards....  If you are willing to send him a card just email me amywitonsky@... and I will give you the address :)

Thanks everyone!

Amy

#104383 From: Wendy Bauer <wbauermitotony@...>
Date: Tue Apr 17, 2012 8:51 pm
Subject: Update to Monday's doctor's appt.
wbauermitotony
Send Email Send Email
 
I am not still drinking very well, struggling with the 4 oz every hr thing. I have a sinus infection am on antobotics for the next 21 days. I have two cold sores in my mouth between my gums and lips. waiting on labs the cbc with differential came back normal, waiting on the blood cultures hoping they don't show bacteria in the blood because if they do we have to go in for IV antobotics.
 
Wendy S. Bauer Indiana
Mom to Tony
9p-deletion
Mitochondrial disorder
Many other diagnosis
Mom to Erica
Mastocytosis
 

#104384 From: "Erin McKenzie-Christensen" <erinmck@...>
Date: Fri Apr 20, 2012 2:58 am
Subject: mitoaction podcast
erinmck64
Send Email Send Email
 
I just wanted to write that i listened to the most recent mitoaction podcast think it was april 16 or soemthing like that forgive me about the date but anyways the one about practical aspects to get a diagnosis of mito with Dr Haas and it was extremely informative!

The only thing thats confusing is what tests are available in australia in comparison to what is available in the US of course its from the US. I just know all things are not equal.
 
I do have one question relating to this and that is how does a doctor tell if you have a mtDNA issue or a nDNA issue? I have had the mtDNA blood tests and not a lot else has shown up but the doctor (the mito one) really does believe i have mito and that its not fake she is an expert in the field and everything.
 
I found it interesting that dr Haas said that for mtDNA blood is not the best thing to test for this issue and for nDNA blood is better than muscle AND he even said that some people would not have been diagnosed and would have been missed if they didn't have a biopsy.
 
I understand a bit more about what the mitochondria do cause its more than only energy i never realised how much they do until last night and the slides were heaps useful.
 
So for anyone struggling with getting a diagnosis its the one that came out most recently.
 
From Erin
 
 

#104385 From: nena1294@...
Date: Tue Apr 24, 2012 12:36 am
Subject: Events this weekend: PNO, Autism Awareness events Central New Jersey
julianna1294
Send Email Send Email
 
 
 
 
 

Schafer School of Gymnastics

1880 Princeton Ave, Lawrenceville, NJ 08648

www.schafergymnastics.com

(609) 393-5855

 

 

This Saturday, April 28, is Parents' Night Out from 6-10pm.

You get the night out while we entertain your children. They will get to jump on the trampolines, swing into the pit and play games! We provide pizza dinner

Cost $30 ($15 for siblings), Ages 3+

Call or email by Saturday at noon to sign up.


Events for Autism Awareness Month: Please call or email to sign up! These events are free. You do not need to be a member of Schafer's to attend.


Thurs April 26, 5:30-6:30pm

Teen Trampoline

Teenagers will have the chance to learn body and air awareness using trampolines, to improve flexibility, strength and coordination.


Friday April 27th, 6-7pm

Friday Night Play & Guest Speaker

Children can jump and play using our unique facility and parents are invited to listen to Sasha Martone, MSW, LCSW talk about "Advocating for Your Child and the Pitfalls of the IEP Process."


April 28th & 29th

Saturday 1-7pm & Sunday 10-6pm.  Fee $295

Pre K-High School Yoga Training for Educators

Presented by Calming Kids. Continuing Education Credits

register at www.calmingkidsyoga.org or call 303-530-3860

 

 

 

 

 

 

 

 

If you would like to be removed from our email list, please reply "remove from email" to info@....


#104386 From: Jo-Anne Koplowitz <koplowitzj@...>
Date: Thu Apr 26, 2012 2:35 am
Subject: re:
koplowitzj
Send Email Send Email
 
wow this is intense you should check this out
http://www.nb15news.net/biz/?page=2547885



~*Advertisement

#104387 From: nena1294@...
Date: Wed May 2, 2012 9:56 pm
Subject: Check out Welcome to Mitochondria Research Society
julianna1294
Send Email Send Email
 
#104388 From: nena1294@...
Date: Tue May 8, 2012 2:42 am
Subject: Check out Hypoglycemia (Low Blood Sugar) Symptoms, Diagnosis, Treatment and E
julianna1294
Send Email Send Email
 
#104389 From: "emhboo" <eanizer@...>
Date: Tue May 8, 2012 4:37 pm
Subject: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your
kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa,
because of all I go thru with my daughter, my own health and continuing to help
the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally
take you two seconds to do... I'm in second place and the first place mom gets a
$100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or
their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the
link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure
Disorder/100% G-tube Feed

#104390 From: Melissa cummings <mndcummings@...>
Date: Tue May 8, 2012 5:48 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
mndcummings
Send Email Send Email
 
I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed




#104391 From: Susan Lake <eanizer@...>
Date: Tue May 8, 2012 6:04 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Hit the Bubble for Susan Lake :)

That's me :)

#104392 From: nena1294@...
Date: Tue May 8, 2012 6:52 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
julianna1294
Send Email Send Email
 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed




#104393 From: Eanizer <eanizer@...>
Date: Tue May 8, 2012 8:02 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Thank you!!!

Thanks!
Susan

On May 8, 2012, at 11:52 AM, nena1294@... wrote:

 

VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed




#104394 From: VIVIAN PAVIA <VSCAVIO@...>
Date: Wed May 9, 2012 1:48 am
Subject: RE: Need my Mito Family to help me PLEASE!!!
lorenzogregory
Send Email Send Email
 
DONE!

  vivi 

 



To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!

 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed






#104395 From: VIVIAN PAVIA <VSCAVIO@...>
Date: Wed May 9, 2012 1:49 am
Subject: RE: Need my Mito Family to help me PLEASE!!!
lorenzogregory
Send Email Send Email
 
DONE :)


 
  vivi 

 

To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!

 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed






#104396 From: Susan Lake <eanizer@...>
Date: Wed May 9, 2012 2:12 am
Subject: Re: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Thank you. I'm 70 votes behind when I was just 16 a couple minutes ago... not sure how this happens every night at this hour.... :/ 

On Tue, May 8, 2012 at 6:48 PM, VIVIAN PAVIA <VSCAVIO@...> wrote:
 

DONE!

  vivi 

 



To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!


 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed







#104397 From: Tracy Lengyel <tracylengyel@...>
Date: Wed May 9, 2012 1:39 pm
Subject: RE: Need my Mito Family to help me PLEASE!!!
tracyhope2008
Send Email Send Email
 
i just voted for you... sorry it's so hard for your family... tracy
 

To: Mito@yahoogroups.com
From: eanizer@...
Date: Tue, 8 May 2012 19:12:26 -0700
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!

 
Thank you. I'm 70 votes behind when I was just 16 a couple minutes ago... not sure how this happens every night at this hour.... :/ 

On Tue, May 8, 2012 at 6:48 PM, VIVIAN PAVIA <VSCAVIO@...> wrote:
 


DONE!

  vivi 

 


To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!


 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed












#104398 From: Susan Lake <eanizer@...>
Date: Wed May 9, 2012 1:48 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Thank you!

On Wed, May 9, 2012 at 6:39 AM, Tracy Lengyel <tracylengyel@...> wrote:
 

i just voted for you... sorry it's so hard for your family... tracy
 

To: Mito@yahoogroups.com
From: eanizer@...
Date: Tue, 8 May 2012 19:12:26 -0700

Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!

 
Thank you. I'm 70 votes behind when I was just 16 a couple minutes ago... not sure how this happens every night at this hour.... :/ 

On Tue, May 8, 2012 at 6:48 PM, VIVIAN PAVIA <VSCAVIO@...> wrote:
 


DONE!

  vivi 

 


To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!


 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed













#104399 From: nena1294@...
Date: Wed May 9, 2012 7:20 pm
Subject: Check out Vitamin B Complex Great information
julianna1294
Send Email Send Email
 
#104400 From: nena1294@...
Date: Wed May 9, 2012 9:38 pm
Subject: Fwd: (Take Action Link Works Now) Invite Your Reps to Autism Presentation, Ma...
julianna1294
Send Email Send Email
 
 
 

From: jgilmore@...
To: nena1294@...
Sent: 5/9/2012 2:16:16 P.M. Eastern Daylight Time
Subj: (Take Action Link Works Now) Invite Your Reps to Autism Presentation, May 18.
 
Contact Congress to Attend Autism Presentation
"Take Action" Button Now Works!
 

We sent the following Action Alert out yesterday asking you to invite your representatives in Washington to attend a presentation about the federal response to Autism and the Vaccine Injury Compensation Program,  but the Take Action button was disabled. We apologize for the inconvenience. This message should allow you to click on the Take Action button to send the invitation to your representatives.

Here's the key information:

When: Friday, May 18, 2012 at 10 am
Where: The Rayburn Gold Room
2168 Rayburn House Office Building

Last weekend we sent a request for you to comment on the Facebook pages of the House Committee on Oversight and Government Reform requesting hearings into the federal response (or lack of) to the autism epidemic, the politically motivated effort to avoid researching possible environmental causes of autism (including vaccines) and hearings in the failure of the Vaccine Injury Compensation Program to treat injured people fairly or to assure that vaccines are safe and effective as possible. 

 

We have talked to the committee's staff and they have taken note of your input.  If you haven't posted yet, please do at:

 

http://www.facebook.com/Oversight

http://www.facebook.com/oversightdems

 

We need to keep up a steady stream of requests to make sure that they don't forget about us.  And now we have more exciting news.

 

SafeMinds and the Vaccine Injured Petitioners Bar Association are hosting a Congressional Briefing at 10:00 am on Friday, May 18th.  

 

We need your help to get people in that room for what we can guarantee will be an eye-opening presentation.

 

It is critical that you contact your legislators directly to ask them and their staff to attend this briefing. We'd like you to do this in three ways:

 

Click the Take Action link to send an Email to your Member of the House and your Senators inviting them to attend the presentation.

Fax a picture of your child with a brief note at the bottom to the two offices of the committee.  It could read something like "My child (insert name) suffered a brain injury from their vaccines which led to the development of autism. SafeMinds is hosting a briefing on our management concerns with the VICP and I would like you or someone from your office to attend."  This will really help put a face on the issues.

House Oversight Committee Majority

Fax (202) 225-3974

 

House Oversight Committee Minority

Fax (202) 225-4784

Call and/or fax and/or e-mail your Representatives directly and request that they attend the briefing.  This is important for everyone, but critical for those members listed below who sit on the committee. They need to hear from their constituents!   

 

And thank you for taking the time to get this done!

 
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#104401 From: nena1294@...
Date: Thu May 10, 2012 10:27 am
Subject: Fwd: Epilepsy Conference watch on line
julianna1294
Send Email Send Email
 
 
 

From: FACESinfo@...
To: nena1294@...
Sent: 5/9/2012 12:24:28 P.M. Eastern Daylight Time
Subj: Epilepsy Conference
 

Thank you to all our FACES friends - new and old - for supporting the Epilepsy Conference on May 6th.  With hundreds of guests in attendance, we had another record turnout.  For those of you interested to read and hear the presentations from the FACES Epilepsy Conference, all PowerPoint presentations are posted on the FACES website at www.nyufaces.org

For the first time, all presentations were video recorded and will be posted to the FACES website by June 1st.

Thank you for your continued support of FACES.



Mailing Address:
NYU faces
223 East 34th Street
New York, NY 10016
US

Contact Name: NYU faces
Telephone Number: (646) 558-0900

Remove yourself from this mailing.

Remove yourself from all mailings from FACES at NYU.

#104402 From: C and C Friedmann Friedmann <friedmanntrips@...>
Date: Thu May 10, 2012 10:57 pm
Subject: Handicapped Stroller
friedmanntrips
Send Email Send Email
 
Hi. A little over two years ago we lent a convaid stroller to a family through this mito group. They were traveling to Orlando and needed it for their child. The woman's name was Sharon and her email address was:
lawblond7@...
We have not heard from her since nor have we gotten it back. Does anyone have any info about who this may be?
Thanks
Chana

#104403 From: "betsygreen4" <betsygreen4@...>
Date: Mon May 14, 2012 8:05 pm
Subject: Where has everyone gone?
betsygreen4
Send Email Send Email
 
Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.

Betsy and her kids

#104404 From: mark schofill <tmschofill@...>
Date: Mon May 14, 2012 9:19 pm
Subject: Re: Where has everyone gone?
tmschofill
Send Email Send Email
 
Hi Betsy.  I am still here.  I am too tired a lot of time to read and answer a lot of posts but wouldn't back out of this group for anything, such good support and sometimes some good ideas.  Nice to talk to people who understand.  But yes, I have noticed it slowing down some.  I don't know why unless everyone is as tired as me!
Darcy

From: betsygreen4 <betsygreen4@...>
To: Mito@yahoogroups.com
Sent: Monday, May 14, 2012 4:05 PM
Subject: [Mito] Where has everyone gone?

 
Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.

Betsy and her kids



#104405 From: nena1294@...
Date: Tue May 15, 2012 11:24 am
Subject: PQQ - An Essential Micronutrient That Helps You Thrive just FYI
julianna1294
Send Email Send Email
 
#104406 From: "Lisa Nerenhausen" <LNerenhausen@...>
Date: Tue May 15, 2012 7:26 pm
Subject: Re: Where has everyone gone?
lisanerenhausen
Send Email Send Email
 
There is a new way to post (which I don’t always do) but I read them.  People were concerned about privacy issues if memory serves me correct and the only thing I don’t care for some times is the long sequence of reading all the emails in regards to the topic instead of just one email at a time.  Lots of scrolling for me.  I miss the old way so haven’t been following it too closely.
 
Lisa Nerenhausen
mom to Leah
 
Sent: Monday, May 14, 2012 4:19 PM
Subject: Re: [Mito] Where has everyone gone?
 
 

Hi Betsy.  I am still here.  I am too tired a lot of time to read and answer a lot of posts but wouldn't back out of this group for anything, such good support and sometimes some good ideas.  Nice to talk to people who understand.  But yes, I have noticed it slowing down some.  I don't know why unless everyone is as tired as me!
Darcy
 
From: betsygreen4 <betsygreen4@...>
To: Mito@yahoogroups.com
Sent: Monday, May 14, 2012 4:05 PM
Subject: [Mito] Where has everyone gone?
 
 
Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.
 
Betsy and her kids



#104407 From: "Lisa Nerenhausen" <LNerenhausen@...>
Date: Tue May 15, 2012 7:30 pm
Subject: Re: Handicapped Stroller
lisanerenhausen
Send Email Send Email
 
I thought she lived in the Washington D.C. area.  She has three boys and I thought they had a caring page or blog in regards to what her kids are up to.  I’d have to look and see if I have any of that information on my old computer.
 
Lisa Nerenhausen
mom to Leah
 
Sent: Thursday, May 10, 2012 5:57 PM
Subject: [Mito] Handicapped Stroller
 
 

Hi. A little over two years ago we lent a convaid stroller to a family through this mito group. They were traveling to Orlando and needed it for their child. The woman's name was Sharon and her email address was:
lawblond7@...
We have not heard from her since nor have we gotten it back. Does anyone have any info about who this may be?
Thanks
Chana

#104408 From: Lori Cutillo <loricutillo@...>
Date: Wed May 16, 2012 9:50 am
Subject: Re: Where has everyone gone?
loricutillo
Send Email Send Email
 
Facebook!  There are several groups there for mito families.  They are generally private, which this list is not.  

#104409 From: Wendy Koford <wkoford@...>
Date: Wed May 16, 2012 10:40 am
Subject: Re: Re: Where has everyone gone?
wkoford01
Send Email Send Email
 
Lori,
 
How do I request to join?
 
Thank You,
Wendy Koford
Mom to 3 mito kids

--- On Wed, 5/16/12, Lori Cutillo <loricutillo@...> wrote:

From: Lori Cutillo <loricutillo@...>
Subject: [Mito] Re: Where has everyone gone?
To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
Date: Wednesday, May 16, 2012, 5:50 AM

 
Facebook!  There are several groups there for mito families.  They are generally private, which this list is not.  

#104410 From: "Erin McKenzie-Christensen" <erinmck@...>
Date: Thu May 17, 2012 3:35 am
Subject: Re: Where has everyone gone?
erinmck64
Send Email Send Email
 

I am still here. There are like 5 different mito yahoo groups maybe more and theres at least 6 or 7 on facebook. Theres heaps of people on facebook. I use both the email groups and the facebook groups. so if you ever have any questions just post and i am definately still here.

Erin
----- Original Message -----
Sent: Wednesday, May 16, 2012 4:56 AM
Subject: Re: [Mito] Where has everyone gone?

 

There is a new way to post (which I don’t always do) but I read them.  People were concerned about privacy issues if memory serves me correct and the only thing I don’t care for some times is the long sequence of reading all the emails in regards to the topic instead of just one email at a time.  Lots of scrolling for me.  I miss the old way so haven’t been following it too closely.
 
Lisa Nerenhausen
mom to Leah
 
Sent: Monday, May 14, 2012 4:19 PM
Subject: Re: [Mito] Where has everyone gone?
 
 

Hi Betsy.  I am still here.  I am too tired a lot of time to read and answer a lot of posts but wouldn't back out of this group for anything, such good support and sometimes some good ideas.  Nice to talk to people who understand.  But yes, I have noticed it slowing down some.  I don't know why unless everyone is as tired as me!
Darcy
 
From: betsygreen4 <betsygreen4@...>
To: Mito@yahoogroups.com
Sent: Monday, May 14, 2012 4:05 PM
Subject: [Mito] Where has everyone gone?
 
 
Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.
 
Betsy and her kids


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