Have you tried to raise the head of your bed?

--- On Sat, 11/14/09, halfonts <JFFox77777@...> wrote:


From: halfonts <JFFox77777@...>
Subject: [fshsociety] Saliva leak into upper Trachea?
To: fshsociety@yahoogroups.com
Date: Saturday, November 14, 2009, 9:38 PM


 



A parallel "Research" thread refers to "swallowing" problems mostly in teens
with FSH. I have a semi-related question, but don't want to hijack the other
thread.

Something new has started this year, which I wonder if it's caused by or related
to FSH?

Facially I have minor asymmetry. My eyes fall open at night, drying out. I can
whistle, drink through a straw, no trouble swallowing, though I drool often from
the corners of my mouth.

When relaxed or asleep lying on my back (or leaning back in a chair) I now leak
saliva into my upper trachea? I wake up suddenly with a deep cough trying to
expel the "drip" (drop) for a quarter-hour.

My Internist tried to say "reflux" -- but I don't think it's acidic backflow
from below -- I'm sure it's normal mouth-liquid (saliva) from above.

Does this make any sense, sound familiar; perhaps another lazy internal throat
muscle affected by FSH?

--jim











[Non-text portions of this message have been removed]

A parallel "Research" thread refers to "swallowing" problems mostly in teens
with FSH. I have a semi-related question, but don't want to hijack the other
thread.

Something new has started this year, which I wonder if it's caused by or related
to FSH?

Facially I have minor asymmetry. My eyes fall open at night, drying out. I can
whistle, drink through a straw, no trouble swallowing, though I drool often from
the corners of my mouth.

When relaxed or asleep lying on my back (or leaning back in a chair) I now leak
saliva into my upper trachea? I wake up suddenly with a deep cough trying to
expel the "drip" (drop) for a quarter-hour.

My Internist tried to say "reflux" -- but I don't think it's acidic backflow
from below -- I'm sure it's normal mouth-liquid (saliva) from above.

Does this make any sense, sound familiar; perhaps another lazy internal throat
muscle affected by FSH?

--jim

Brad,
   A woman with the "right" values would never overlook you for that reason.  I
know I married a man who was very different from what I thought my ideal was,
yet we were just as in love, and able to work thru the problems of life and
conflicts of living together, and had 23 beautiful years together before he
succumbed to complications following a kidney replacement surgery.  I doubt he
had ever dreamed of marrying anyone like me either, but we eventually found one
another, and it was good.  Very good.  I still miss him, now 10 years later!!! 
AND we have two great sons as a result as well!!!  (One his adopted son from a
previous marriage, and the other our birth son, who at this point in his life
(31 years) has not shown any signs of FSH thus far!!!      Rosemary



--- On Sat, 11/14/09, bradford_kleemann <wb9whi@...> wrote:

> From: bradford_kleemann <wb9whi@...>
> Subject: [fshsociety] Is it impossible to marry with FSHD
> To: fshsociety@yahoogroups.com
> Date: Saturday, November 14, 2009, 2:09 PM
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>  
>
>
>
>
>
>
>
>
>
>       I was wondering if it impossible for men to marry
> with FSHD.  I know women like big muscles and I think they
> probably want someone to carry them over the threshold, so I
> was wondering if that's what's keeping me single.
>
> --Brad
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>

I was wondering if it impossible for men to marry with FSHD.  I know women like
big muscles and I think they probably want someone to carry them over the
threshold, so I was wondering if that's what's keeping me single.
--Brad

Alex was born prematurely (14 weeks early weighing 1# 14 oz and was 14 inches
long.)
He was a spunky kid from get go and pulled out the ventilator when he was 2
weeks old. He breathed on his own for about 3-4 days but his lungs began to
hemorrhage and then he went into a cardiac arrest that lasted ~ 20 minutes until
they got his heart beat back.  He was a couple of ounces over the 2 pound mark
at this point.  This resulted in massive destruction of the white matter in his
brain. It was from that point on he developed severe reflux and projectile
vomiting.
Easy to summarize in hindsight but basically he vomited every  feeding and
failed to gain weight.
His airway would also collapse several times through out the day and night
causing him to stop breathing. It was difficult to feed him because he has
delayed gastric emptying, so rarely felt hunger since food sat his stomach for
longer periods.  He was "officially" diagnosed with spastic quad CP when he was
two.  He is also visually impaired from retinopathy of prematurity(ROP). He had
laser surgery to prevent retinal detachment at 10 week of age.  His last visit
to his ophthalmologist has the doctor think this surgery will be a preventive
for the same thing happening with FSH.
Alex was dx about 18 months ago with FSH when he was 13.  He had an appointment
with the PMR doc who has managed his CP since he was 2.  Keep in mind that Alex
is the youngest of six, 4 which are big hunky brothers.  On the visit we asked
why he had developed this BIG muscle in his forearm( Popeye would have been
proud).  His docs eyes just got really puzzled and he shook his head and said "
Joanne, he doesn't have a big muscle...the ones surrounding it have
atrophied".  My dad had been diagnosed several years before when he was in his
late 70's and developed foot drop.  He had had trouble lifting his arms over
his head since his late 30's but blamed it on an old high school football
injury.
 
Since Alex has never walked without walkers and braces(his first afo's were made
when he was 18 months) and he can not stand independently and the fact that he
has always neglected his left side makes it hard to know what is effecting in
what degree.  He was able to take his first steps using a walker whenhe was
three after a round of botox loosened his leg muscles enough to move them in
a purposful way.   I do know that as he goes through his teen growth spurt his
body is looking very scary.  He has always, on a good day,  been no higher
than on the 3%tile for weight.  Height is within the normal range for his
age.  Of concern now are his hips and chest.  The hipbones are very prominent
and there is worry about pressure sores developing. The muscles have atrophied
badly in that area as well. 
He just visited the Muscular Dystrophy doc last week.  Alex is developing
contractures of the elbows and feet. Treatment for CP  can be counter
productive for FSH.  CP you want to loosen the spasticity of the muscles. 
That is usually through PT, drugs or surgery. We have just finish the PT and OT
and continue to do stretching exercises at home. In Feb, the decision will be
made in the neuromusclur clinic whether to try bacoflen or not.  Botox
injections he usually receives for spasticity have been ruled out because of the
FSH.  If that doesn't work it is off the orthopedic surgeon.  All this is I'm
sure more then you wanted to know.
 
I don't understand why a swallow test was done on your daughter to start with?
Joanne
--- On Sat, 11/14/09, Angela Jackson <mkdirin04@...> wrote:


From: Angela Jackson <mkdirin04@...>
Subject: Re: [fshsociety] Re: Research
To: fshsociety@yahoogroups.com
Date: Saturday, November 14, 2009, 10:00 AM


 



Joanne,

Thanks for the info, but my daughter is 13 right now and does not aspirate,
choke, reflux. According to the person who did the video swallow, MD people will
get to aspirating and then choking and have massive reflux before you know it,
to the point of just throwing up without reason. I don' t see that happening at
all. So, from the info you have given me, in your case it was reversed from what
the doctor has told me. I'm glad your son does not have to have a g-tube any
longer.

Joanne can I ask you how affected your son is with FSH at this point in time?
and, did he have other GI issues from birth?

Thank you for your input. I appreciate it.

Take care and God bless
 
Angela
 
I will walk the Breast Cancer 3 Day  November 6-8, 2009. Please donate.
Everyone deserves a lifetime!  I'M WALKING FOR YOU!!! To see my webpage and
donate, go to this link: 
 http://www.the3day. org/goto/ AngelaJackson

____________ _________ _________ __
From: mymajc <mymajc@yahoo. com>
To: fshsociety@yahoogro ups.com
Sent: Fri, November 13, 2009 5:16:26 PM
Subject: Re: [fshsociety] Re: Research

 
My son had a gtube from 18 months till he was 4. Aspiration and severe reflux
were the issues.
He is 14 and been gtube free for 10 years and I miss it still.  It provided an
no worries way to make sure he received his medications and kept him hydrated. 
If it wasn't for that, he would have been in patient much more frequently.
 
I just think if God feels that a feeding tube ( other wise know as an umbilicus
cord)   is the correct way to nourish the newest conceived of his children on
here on earth, who am I to say it isn't good enough for the gift he entrusted me
with.
Joanne

--- On Fri, 11/13/09, mkdirin04 <mkdirin04@yahoo. com> wrote:

From: mkdirin04 <mkdirin04@yahoo. com>
Subject: [fshsociety] Re: Research
To: fshsociety@yahoogro ups.com
Date: Friday, November 13, 2009, 1:41 PM

 

Hi Tim and everyone else,

I was looking for info regarding this new study/research lab at the u of
Rochester. We visited my daughters doc yesterday. She told me I should take my
daughter there, because she is such an "unusual case", and "she would be
interested in hearing what they have to say". My neuro (daughter's doc) says she
has never seen a child at this age with such progression as has taken place.

Now, this was brought up because she wants my daughter to have a G-Tube added. I
am against it. I have not seen any reason for this procedure to be conducted.
They seem to think otherwise due to a swallow study that was recently done, and
not completed I might add. The speech therapist doing the test said she had seen
enough. Aparantly the doc is reading somewhere in the report that it was too
dangerous to complete the test beyond the liquids. I didn't see that in the
report (my copy). this is supposed to be a specialist in speech and swallow
studies for neuro-muscular diseases. the person conducting the test never
inplicated that it was dangerous to complete. My daughter eats food, all kinds,
every day. She has not aspirated, nor has she had aspiration pneumonia, or any
other pneumonia for that matter.

Ok, getting back on the subject. This new research place for FSH, what kind of
place is it? What do they do? Would it be worth mine and my daughters time to
go? If so, is there any funds available for reimbursement or scholarships for
travel expenses? I would be intersted in going, but honestly, we are talking
about a lot of money that I don't have.

Can anyone give me any feedback?

Thanks
Angela

--- In fshsociety@yahoogro ups.com, "timdbernard" <timdbernard@ ...> wrote:
>
> Hi all, hope everyone is doing well. I found out the other day that I
> will be going to Rochester University this summer for some testing. I
> guess it will be a muscle and skin biopsy, blood tests, dna test, and
> strength testing. I have never had the dna test so I am glad to be
> going. Have any of you been to the university before. I am a bit
> nervous but hopefully I can help the research process. Every little bit
> helps I am sure. From what I understand they have a new facility there
> for FSH so I bet it will be nice. Of course the plane ride there and
> back will be my favorite part since I haven't been on a plane since
> 1985 when I was eleven years old. I am looking forward to it.
> Well, hope everyone has a great day.
> Tim (Who wishes this trip was to try a new drug study)
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Joanne,

Thanks for the info, but my daughter is 13 right now and does not aspirate,
choke, reflux. According to the person who did the video swallow, MD people will
get to aspirating and then choking and have massive reflux before you know it,
to the point of just throwing up without reason. I don' t see that happening at
all. So, from the info you have given me, in your case it was reversed from what
the doctor has told me. I'm glad your son does not have to have a g-tube any
longer.

Joanne can I ask you how affected your son is with FSH at this point in time?
and, did he have other GI issues from birth?

Thank you for your input. I appreciate it.

Take care and God bless
 
Angela
 
I will walk the Breast Cancer 3 Day  November 6-8, 2009. Please donate.
Everyone deserves a lifetime!  I'M WALKING FOR YOU!!! To see my webpage and
donate, go to this link: 
 http://www.the3day.org/goto/AngelaJackson




________________________________
From: mymajc <mymajc@...>
To: fshsociety@yahoogroups.com
Sent: Fri, November 13, 2009 5:16:26 PM
Subject: Re: [fshsociety] Re: Research

 
My son had a gtube from 18 months till he was 4. Aspiration and severe reflux
were the issues.
He is 14 and been gtube free for 10 years and I miss it still.  It provided an
no worries way to make sure he received his medications and kept him hydrated. 
If it wasn't for that, he would have been in patient much more frequently.
 
I just think if God feels that a feeding tube ( other wise know as an umbilicus
cord)   is the correct way to nourish the newest conceived of his children on
here on earth, who am I to say it isn't good enough for the gift he entrusted me
with.
Joanne

--- On Fri, 11/13/09, mkdirin04 <mkdirin04@yahoo. com> wrote:

From: mkdirin04 <mkdirin04@yahoo. com>
Subject: [fshsociety] Re: Research
To: fshsociety@yahoogro ups.com
Date: Friday, November 13, 2009, 1:41 PM

 

Hi Tim and everyone else,

I was looking for info regarding this new study/research lab at the u of
Rochester. We visited my daughters doc yesterday. She told me I should take my
daughter there, because she is such an "unusual case", and "she would be
interested in hearing what they have to say". My neuro (daughter's doc) says she
has never seen a child at this age with such progression as has taken place.

Now, this was brought up because she wants my daughter to have a G-Tube added. I
am against it. I have not seen any reason for this procedure to be conducted.
They seem to think otherwise due to a swallow study that was recently done, and
not completed I might add. The speech therapist doing the test said she had seen
enough. Aparantly the doc is reading somewhere in the report that it was too
dangerous to complete the test beyond the liquids. I didn't see that in the
report (my copy). this is supposed to be a specialist in speech and swallow
studies for neuro-muscular diseases. the person conducting the test never
inplicated that it was dangerous to complete. My daughter eats food, all kinds,
every day. She has not aspirated, nor has she had aspiration pneumonia, or any
other pneumonia for that matter.

Ok, getting back on the subject. This new research place for FSH, what kind of
place is it? What do they do? Would it be worth mine and my daughters time to
go? If so, is there any funds available for reimbursement or scholarships for
travel expenses? I would be intersted in going, but honestly, we are talking
about a lot of money that I don't have.

Can anyone give me any feedback?

Thanks
Angela

--- In fshsociety@yahoogro ups.com, "timdbernard" <timdbernard@ ...> wrote:
>
> Hi all, hope everyone is doing well. I found out the other day that I
> will be going to Rochester University this summer for some testing. I
> guess it will be a muscle and skin biopsy, blood tests, dna test, and
> strength testing. I have never had the dna test so I am glad to be
> going. Have any of you been to the university before. I am a bit
> nervous but hopefully I can help the research process. Every little bit
> helps I am sure. From what I understand they have a new facility there
> for FSH so I bet it will be nice. Of course the plane ride there and
> back will be my favorite part since I haven't been on a plane since
> 1985 when I was eleven years old. I am looking forward to it.
> Well, hope everyone has a great day.
> Tim (Who wishes this trip was to try a new drug study)
>

[Non-text portions of this message have been removed]




[Non-text portions of this message have been removed]

I add my thanks as well, and acknowledge you as an important part of seeing so
much action on our behalf.  We are all indebted to you!!
Rosemary



--- On Fri, 11/13/09, Ray Jordan <rrev@...> wrote:

> From: Ray Jordan <rrev@...>
> Subject: Re: [fshsociety] FSH Society FSHD 2009 International Research
Consortium & Research Planning Meet
> To: fshsociety@yahoogroups.com
> Date: Friday, November 13, 2009, 9:54 PM
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>  
>
>
>
>
>
>
>
>
>
>       Thank you Dan,
>
>
>
> I have so far read a few of the abstracts.  They make
> fascinating reading and show how far the research has come
> in such a relatively short time.  There are still a number
> of research results and conclusions that don't fully
> agree, but it is reassuring that the researchers themselves
> acknowledge this and are working to unify the field.
>
>
>
> I can not commend highly enough the efforts of all those
> people, the ones whose names we know and those we don't
> (yet), from all over the world who are working to solve
> FSHD.
>
>
>
> Thanks again,
>
>
>
> Ray :-)
>
>
>
> ----- Original Message -----
>
>   From: fshsocietyforum
>
>   To: fshsociety@yahoogro
> ups.com
>
>   Sent: Saturday, November 14, 2009 4:13 AM
>
>   Subject: [fshsociety] FSH Society FSHD 2009 International
> Research Consortium & Research Planning Meet
>
>
>
> November 13, 2009
>
>   FSH Society, Inc.
>
>
>
> Scientists, patients, advocates, biotech and pharmaceutical
> companies, and clinicians from throughout the world gathered
> at Boston Biomedical Research Institute (BBRI) this week on
> November 9-10, 2009 to attend the FSH Society 2009
> International Research Consortium and Research Planning
> Meetings for facioscapulohumeral muscular dystrophy (FSHD).
> Daniel Paul Perez, President and co-founder of the FSH
> Society, organized the meetings that focused on
> collaborating to find new treatments and cures for FSHD,
> which is the most common adult form of muscular dystrophy
> affecting 1 in 14,000. The meeting was co-hosted by Dr.
> Charles P. Emerson, Jr., distinguished scientist and
> Director of the Boston Biomedical Research Institute, and
> Co-Director, along with Dr. Louis Kunkel of Harvard Medical
> School and Children's Hospital of the NIH Eunice Shriver
> Kennedy NICHD Sen. Paul D. Wellstone MD CRC for FSHD. Our
> scientific clinical and research co-chairs were: [clinical]
> Kathryn R. Wagner, M.D., Ph.D., Kennedy Krieger Institute,
> Baltimore, Maryland & The Johns Hopkins University
> School of Medicine, Baltimore, Maryland & NIH Eunice
> Kennedy Shriver NICHD Boston Biomedical Research Institute
> Senator Paul D. Wellstone Muscular Dystrophy Cooperative
> Research Center; and, [research] Silvère van der Maarel,
> Ph.D., Leiden University Medical Center, Leiden, the
> Netherlands & Fields Center for FSHD and Neuromuscular
> Research.
>
>
>
> We had 87 researchers and clinicians from institutions
> across the US and around the world, including Kennedy
> Krieger Institute, Johns Hopkins, University of Milan,
> University of Sydney (Australia), AcceleronPharma, Genzyme,
> Novartis, University of Washington, Ohio State University,
> University of Illinois, UMass, University of Minnesota,
> University de Mons-Hainaut (Belgium), INSERM - Paris, Nice,
> Marseille, AFM, Leiden University Medical Center
> (Netherlands) , University of Nottingham (UK), University of
> Rochester, Muscular Dystrophy Association (Tucson, AZ),
> University of California at Irvine, Genzyme, and King's
> College London (in addition to Boston Biomedical,
> Children's Hospital and Harvard Medical School as well
> as the FSH Society), among others.
>
>
>
> Also joining the meetings were three program directors from
> the NIH: Ljubisa Vitkovic, Ph.D., program director for the
> Eunice Kennedy Shriver National Institute of Child Health
> and Human Development (NICHD), John Porter, Ph.D., program
> director for the National Institute of Neurodegenerative
> Disorders and Stroke (NINDS), and Glen Nuckolls, Ph.D.,
> program director of the National Institute of Arthritis and
> Musculoskeletal and Skin Diseases (NIAMS).
>
>
>
> Sponsors for the event included Acceleron Pharma,
> Association Francaise Contre les Myopathies (AFM), Athena
> Diagnostics, The Fields Center at University of Rochester,
> FSH Society, FSHD Global Research Foundation, Genomic
> Vision, Genzyme, the NIH Eunice Kennedy Shriver NICHD, and
> Boston Biomedical Research Institute Senator Paul D.
> Wellstone Muscular Dystrophy Cooperative Research Center.
>
>
>
> It was a very successful workshop. And really was "the
> place to be" for FSHD research. The atmosphere was very
> positive and constructive and all in attendance felt that
> the mechanism of FSHD is becoming increasingly clear. Also
> was excellent to see that the interaction between the BBRI
> Wellstone MDCRC for FSHD and Fields Center for FSHD are
> becoming stronger, evidenced by several announcements and
> agreements to work jointly and collaboratively on projects.
> Also, excellent to see most all FSHD organizations working
> extremely well together side by side in the common front to
> solve and treat FSHD.
>
>
>
> We thank you for you financial support of the FSH Society,
> Inc. and its research programs to make such significant
> progress possible.
>
>
>
> For program and abstracts please see FSH Society, Inc. web
> site @:
>
>
>
> http://www.fshsocie
> ty.org/assets/ pdf/FSHSocietyIR C2009ProgramAbst
> racts.pdf
>
>
>
> For organizer, hosts, and sponsors please see:
>
>
>
> http://www.fshsocie
> ty.org/assets/ pdf/IRC2009_ Sponsor_Poster_ 09Nov09.pdf
>
>
>
>
> Best,
>
>
>
> Daniel Paul Perez
>
>   CEO
>
>   FSH Society, Inc.
>
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>

Thank you Dan,

I have so far read a few of the abstracts.  They make fascinating reading and
show how far the research has come in such a relatively short time.  There are
still a number of research results and conclusions that don't fully agree, but
it is reassuring that the researchers themselves acknowledge this and are
working to unify the field.

I can not commend highly enough the efforts of all those people, the ones whose
names we know and those we don't (yet), from all over the world who are working
to solve FSHD.

Thanks again,

Ray :-)

   ----- Original Message -----
   From: fshsocietyforum
   To: fshsociety@yahoogroups.com
   Sent: Saturday, November 14, 2009 4:13 AM
   Subject: [fshsociety] FSH Society FSHD 2009 International Research Consortium
& Research Planning Meet



   November 13, 2009
   FSH Society, Inc.

   Scientists, patients, advocates, biotech and pharmaceutical companies, and
clinicians from throughout the world gathered at Boston Biomedical Research
Institute (BBRI) this week on November 9-10, 2009 to attend the FSH Society 2009
International Research Consortium and Research Planning Meetings for
facioscapulohumeral muscular dystrophy (FSHD). Daniel Paul Perez, President and
co-founder of the FSH Society, organized the meetings that focused on
collaborating to find new treatments and cures for FSHD, which is the most
common adult form of muscular dystrophy affecting 1 in 14,000. The meeting was
co-hosted by Dr. Charles P. Emerson, Jr., distinguished scientist and Director
of the Boston Biomedical Research Institute, and Co-Director, along with Dr.
Louis Kunkel of Harvard Medical School and Children's Hospital of the NIH Eunice
Shriver Kennedy NICHD Sen. Paul D. Wellstone MD CRC for FSHD. Our scientific
clinical and research co-chairs were: [clinical] Kathryn R. Wagner, M.D., Ph.D.,
Kennedy Krieger Institute, Baltimore, Maryland & The Johns Hopkins University
School of Medicine, Baltimore, Maryland & NIH Eunice Kennedy Shriver NICHD
Boston Biomedical Research Institute Senator Paul D. Wellstone Muscular
Dystrophy Cooperative Research Center; and, [research] Silvère van der Maarel,
Ph.D., Leiden University Medical Center, Leiden, the Netherlands & Fields Center
for FSHD and Neuromuscular Research.

   We had 87 researchers and clinicians from institutions across the US and
around the world, including Kennedy Krieger Institute, Johns Hopkins, University
of Milan, University of Sydney (Australia), AcceleronPharma, Genzyme, Novartis,
University of Washington, Ohio State University, University of Illinois, UMass,
University of Minnesota, University de Mons-Hainaut (Belgium), INSERM - Paris,
Nice, Marseille, AFM, Leiden University Medical Center (Netherlands), University
of Nottingham (UK), University of Rochester, Muscular Dystrophy Association
(Tucson, AZ), University of California at Irvine, Genzyme, and King's College
London (in addition to Boston Biomedical, Children's Hospital and Harvard
Medical School as well as the FSH Society), among others.

   Also joining the meetings were three program directors from the NIH: Ljubisa
Vitkovic, Ph.D., program director for the Eunice Kennedy Shriver National
Institute of Child Health and Human Development (NICHD), John Porter, Ph.D.,
program director for the National Institute of Neurodegenerative Disorders and
Stroke (NINDS), and Glen Nuckolls, Ph.D., program director of the National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

   Sponsors for the event included Acceleron Pharma, Association Francaise Contre
les Myopathies (AFM), Athena Diagnostics, The Fields Center at University of
Rochester, FSH Society, FSHD Global Research Foundation, Genomic Vision,
Genzyme, the NIH Eunice Kennedy Shriver NICHD, and Boston Biomedical Research
Institute Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research
Center.

   It was a very successful workshop. And really was "the place to be" for FSHD
research. The atmosphere was very positive and constructive and all in
attendance felt that the mechanism of FSHD is becoming increasingly clear. Also
was excellent to see that the interaction between the BBRI Wellstone MDCRC for
FSHD and Fields Center for FSHD are becoming stronger, evidenced by several
announcements and agreements to work jointly and collaboratively on projects.
Also, excellent to see most all FSHD organizations working extremely well
together side by side in the common front to solve and treat FSHD.

   We thank you for you financial support of the FSH Society, Inc. and its
research programs to make such significant progress possible.

   For program and abstracts please see FSH Society, Inc. web site @:

   http://www.fshsociety.org/assets/pdf/FSHSocietyIRC2009ProgramAbstracts.pdf

   For organizer, hosts, and sponsors please see:

   http://www.fshsociety.org/assets/pdf/IRC2009_Sponsor_Poster_09Nov09.pdf

   Best,

   Daniel Paul Perez
   CEO
   FSH Society, Inc.





[Non-text portions of this message have been removed]

My son had a gtube from 18 months till he was 4. Aspiration and severe reflux
were the issues.
He is 14 and been gtube free for 10 years and I miss it still.  It provided an
no worries way to make sure he received his medications and kept him hydrated. 
If it wasn't for that, he would have been in patient much more frequently.
 
I just think if God feels that a feeding tube ( other wise know as an umbilicus
cord)   is the correct way to nourish the newest conceived of his children on
here on earth, who am I to say it isn't good enough for the gift he entrusted me
with.
Joanne

--- On Fri, 11/13/09, mkdirin04 <mkdirin04@...> wrote:


From: mkdirin04 <mkdirin04@...>
Subject: [fshsociety] Re: Research
To: fshsociety@yahoogroups.com
Date: Friday, November 13, 2009, 1:41 PM


 




Hi Tim and everyone else,

I was looking for info regarding this new study/research lab at the u of
Rochester. We visited my daughters doc yesterday. She told me I should take my
daughter there, because she is such an "unusual case", and "she would be
interested in hearing what they have to say". My neuro (daughter's doc) says she
has never seen a child at this age with such progression as has taken place.

Now, this was brought up because she wants my daughter to have a G-Tube added. I
am against it. I have not seen any reason for this procedure to be conducted.
They seem to think otherwise due to a swallow study that was recently done, and
not completed I might add. The speech therapist doing the test said she had seen
enough. Aparantly the doc is reading somewhere in the report that it was too
dangerous to complete the test beyond the liquids. I didn't see that in the
report (my copy). this is supposed to be a specialist in speech and swallow
studies for neuro-muscular diseases. the person conducting the test never
inplicated that it was dangerous to complete. My daughter eats food, all kinds,
every day. She has not aspirated, nor has she had aspiration pneumonia, or any
other pneumonia for that matter.

Ok, getting back on the subject. This new research place for FSH, what kind of
place is it? What do they do? Would it be worth mine and my daughters time to
go? If so, is there any funds available for reimbursement or scholarships for
travel expenses? I would be intersted in going, but honestly, we are talking
about a lot of money that I don't have.

Can anyone give me any feedback?

Thanks
Angela

--- In fshsociety@yahoogro ups.com, "timdbernard" <timdbernard@ ...> wrote:
>
> Hi all, hope everyone is doing well. I found out the other day that I
> will be going to Rochester University this summer for some testing. I
> guess it will be a muscle and skin biopsy, blood tests, dna test, and
> strength testing. I have never had the dna test so I am glad to be
> going. Have any of you been to the university before. I am a bit
> nervous but hopefully I can help the research process. Every little bit
> helps I am sure. From what I understand they have a new facility there
> for FSH so I bet it will be nice. Of course the plane ride there and
> back will be my favorite part since I haven't been on a plane since
> 1985 when I was eleven years old. I am looking forward to it.
> Well, hope everyone has a great day.
> Tim (Who wishes this trip was to try a new drug study)
>











[Non-text portions of this message have been removed]

http://www.institut-myologie.org/anglais/ewb_pages/n/news_4751.php?xtor=EPR-32-[\
Newsletter-us-N23]-20091112-[news]

That would be correct Marti. Thank you for helping me out too. I can't even
think right now. I'm so glad you wrote in. I was thinking there had been someone
recently who went through this at high school level.

Go to the nurse to start Leandra. Try that first. That will get the ball
rolling.
 
Angela
 
I will walk the Breast Cancer 3 Day  November 6-8, 2009. Please donate.
Everyone deserves a lifetime!  I'M WALKING FOR YOU!!! To see my webpage and
donate, go to this link: 
 http://www.the3day.org/goto/AngelaJackson




________________________________
From: Marti Stout <martijo67@...>
To: fshsociety@yahoogroups.com
Sent: Fri, November 13, 2009 1:08:59 PM
Subject: Re: [fshsociety] Re: How to Go About Obtaining High School PE Exemption
for My Teen

 
My son has been out of high school for almost 2 years now.  He was not
diagnosed until the end of his Junior year of HS and thus had already completed
his PE requirements (ROTC).  Anyway, there was some type of physical testing
that was going to be required of all students his Senior year.  We simply had a
note from his neurologist at the MDA clinic and he was waived from the test and
did not lose any kind of credits.  Your school nurse is a good place to start -
that's where we started.  The nurse can certainly gets things channeled in the
right direction ... the teachers themselves are not always the answer.  The
nurse is a more "official" chain and can help get things in your child's records
that is needed to be there.
 
Marti

--- On Fri, 11/13/09, Angela Jackson <mkdirin04@yahoo. com> wrote:

From: Angela Jackson <mkdirin04@yahoo. com>
Subject: Re: [fshsociety] Re: How to Go About Obtaining High School PE Exemption
for My Teen
To: fshsociety@yahoogro ups.com
Date: Friday, November 13, 2009, 1:01 PM

 

Is your daughter set on an IEP at school? the doctor shuld be able to have some
control in this matter. you really need to talk to your doctor and also get in
touch with the counselor and any special ed admins. the curriculum can be
altered, but they have to meet on it (an ARD meeting). There are other areas of
physical education she can get for diploma status.

I go through this on a regular basis for my daughter. You just have to talk or
get in touch with the right person. Granted, we are still in elem/Jr High, but
there is a way to get it taken care of without loss of credit.
 
Angela
 
I will walk the Breast Cancer 3 Day  November 6-8, 2009. Please donate.
Everyone deserves a lifetime!  I'M WALKING FOR YOU!!! To see my webpage and
donate, go to this link: 
 http://www.the3day. org/goto/ AngelaJackson

____________ _________ _________ __
From: mymajc <mymajc@yahoo. com>
To: fshsociety@yahoogro ups.com
Sent: Thu, November 12, 2009 9:54:43 PM
Subject: Re: [fshsociety] Re: How to Go About Obtaining High School PE Exemption
for My Teen

 
Not neccessarily. PE tends to be part of the HS curriculum now days an a
required credit for a diploma.  Doctors notes my excuse her from some
activities but not the required classwork and testing.
Joanne

--- On Thu, 11/12/09, amandanorskog <amandanorskog@ gmail.com> wrote:

From: amandanorskog <amandanorskog@ gmail.com>
Subject: [fshsociety] Re: How to Go About Obtaining High School PE Exemption for
My Teen
To: fshsociety@yahoogro ups.com
Date: Thursday, November 12, 2009, 1:46 PM

 

The Doctor's note should suffice. Bring it to her school counselor and they
should put her in a different class. I did first semester PE my freshman year,
and second semester had is swapped for a cooking class (I think it's all that
was open during that period).

--- In fshsociety@yahoogro ups.com, "leandraco" <leandraco@. ..> wrote:
>
> My 15-year-old has progressed quickly over the past year and is struggling
with stairs, rising from a chair/floor and even walking. Most all of her muscle
groups are weaker at age 15 than mine are at 41. At the end of this term she is
supposed to begin PE, and from what I have heard and from reading the curriculum
there are many things she cannot do at all and most I don't feel she should even
attempt in the interest of avoiding acceleration of the progression of the
disease. Also, I'm not interested in putting her disabilities on display for
others and wish to avoid opportunities for peer ridicule. I have shared my
concerns with the physician who confirmed her diagnosis for us over this past
summer, and he has agreed to "send [us] a letter".
>
> Is there any sort of government or state form that I need to have him
complete? Maybe just a form from the school or a "letter" from him is
sufficient? Does anyone else have recent experience with this?
>
> Any help very greatly appreciated! :-)
>
> Leandra
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]




[Non-text portions of this message have been removed]

My son has been out of high school for almost 2 years now.  He was not
diagnosed until the end of his Junior year of HS and thus had already completed
his PE requirements (ROTC).  Anyway, there was some type of physical testing
that was going to be required of all students his Senior year.  We simply had a
note from his neurologist at the MDA clinic and he was waived from the test and
did not lose any kind of credits.  Your school nurse is a good place to start -
that's where we started.  The nurse can certainly gets things channeled in the
right direction ... the teachers themselves are not always the answer.  The
nurse is a more "official" chain and can help get things in your child's records
that is needed to be there.
 
Marti

--- On Fri, 11/13/09, Angela Jackson <mkdirin04@...> wrote:


From: Angela Jackson <mkdirin04@...>
Subject: Re: [fshsociety] Re: How to Go About Obtaining High School PE Exemption
for My Teen
To: fshsociety@yahoogroups.com
Date: Friday, November 13, 2009, 1:01 PM


 



Is your daughter set on an IEP at school? the doctor shuld be able to have some
control in this matter. you really need to talk to your doctor and also get in
touch with the counselor and any special ed admins. the curriculum can be
altered, but they have to meet on it (an ARD meeting). There are other areas of
physical education she can get for diploma status.

I go through this on a regular basis for my daughter. You just have to talk or
get in touch with the right person. Granted, we are still in elem/Jr High, but
there is a way to get it taken care of without loss of credit.
 
Angela
 
I will walk the Breast Cancer 3 Day  November 6-8, 2009. Please donate.
Everyone deserves a lifetime!  I'M WALKING FOR YOU!!! To see my webpage and
donate, go to this link: 
 http://www.the3day. org/goto/ AngelaJackson

____________ _________ _________ __
From: mymajc <mymajc@yahoo. com>
To: fshsociety@yahoogro ups.com
Sent: Thu, November 12, 2009 9:54:43 PM
Subject: Re: [fshsociety] Re: How to Go About Obtaining High School PE Exemption
for My Teen

 
Not neccessarily. PE tends to be part of the HS curriculum now days an a
required credit for a diploma.  Doctors notes my excuse her from some
activities but not the required classwork and testing.
Joanne

--- On Thu, 11/12/09, amandanorskog <amandanorskog@ gmail.com> wrote:

From: amandanorskog <amandanorskog@ gmail.com>
Subject: [fshsociety] Re: How to Go About Obtaining High School PE Exemption for
My Teen
To: fshsociety@yahoogro ups.com
Date: Thursday, November 12, 2009, 1:46 PM

 

The Doctor's note should suffice. Bring it to her school counselor and they
should put her in a different class. I did first semester PE my freshman year,
and second semester had is swapped for a cooking class (I think it's all that
was open during that period).

--- In fshsociety@yahoogro ups.com, "leandraco" <leandraco@. ..> wrote:
>
> My 15-year-old has progressed quickly over the past year and is struggling
with stairs, rising from a chair/floor and even walking. Most all of her muscle
groups are weaker at age 15 than mine are at 41. At the end of this term she is
supposed to begin PE, and from what I have heard and from reading the curriculum
there are many things she cannot do at all and most I don't feel she should even
attempt in the interest of avoiding acceleration of the progression of the
disease. Also, I'm not interested in putting her disabilities on display for
others and wish to avoid opportunities for peer ridicule. I have shared my
concerns with the physician who confirmed her diagnosis for us over this past
summer, and he has agreed to "send [us] a letter".
>
> Is there any sort of government or state form that I need to have him
complete? Maybe just a form from the school or a "letter" from him is
sufficient? Does anyone else have recent experience with this?
>
> Any help very greatly appreciated! :-)
>
> Leandra
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Angela,

I'd also consider seeing Kathryn Wagner at Kennedy Krieger Institute / Johns
Hopkins and Katherine Mathews at University of Iowa.  Both have very strong
perspectives in pediatrics and FSHD.  Does Rochester have a pediatric FSHD
specialist?  Wagner would be able to help with travel expenses as part of the
Wellstone for FSHD and is interested in iFSHD or non-4-linked cases as  well. 
See wellstone.bbri.org

Contact me at the FSH Society if you need contact info.

Where are you geographically?  Iowa is probably the strongest pediatrics in the
country.

Best,

Daniel

--- In fshsociety@yahoogroups.com, "mkdirin04" <mkdirin04@...> wrote:
>
>
> Hi Tim and everyone else,
>
> I was looking for info regarding this new study/research lab at the u of
Rochester. We visited  my daughters doc yesterday. She told me I should take my
daughter there, because she is such an "unusual case", and "she would be
interested in hearing what they have to say". My neuro (daughter's doc) says she
has never seen a child at this age with such progression as has taken place.
>
> Now, this was brought up because she wants my daughter to have a G-Tube added.
I am against it. I have not seen any reason for this procedure to be conducted.
They seem to think otherwise due to a swallow study that was recently done, and
not completed I might add. The speech therapist doing the test said she had seen
enough. Aparantly the doc is reading somewhere in the report that it was too
dangerous to complete the test beyond the liquids. I didn't see that in the
report (my copy). this is supposed to be a specialist in speech and swallow
studies for neuro-muscular diseases. the person conducting the test never
inplicated that it was dangerous to complete. My daughter eats food, all kinds,
every day. She has not aspirated, nor has she had aspiration pneumonia, or any
other pneumonia for that matter.
>
> Ok, getting back on the subject. This new research place for FSH, what kind of
place is it? What do they do? Would it be worth mine and my daughters time to
go? If so, is there any funds available for reimbursement or scholarships for
travel expenses? I would be intersted in going, but honestly, we are talking
about a lot of money that I don't have.
>
> Can anyone give me any feedback?
>
> Thanks
> Angela
>
>
>
>
>
>
> --- In fshsociety@yahoogroups.com, "timdbernard" <timdbernard@> wrote:
> >
> > Hi all, hope everyone is doing well. I found out the other day that I
> > will be going to Rochester University this summer for some testing. I
> > guess it will be a muscle and skin biopsy, blood tests, dna test, and
> > strength testing. I have never had the dna test so I am glad to be
> > going. Have any of you been to the university before. I am a bit
> > nervous but hopefully I can help the research process. Every little bit
> > helps I am sure. From what I understand they have a new facility there
> > for FSH so I bet it will be nice. Of course the plane ride there and
> > back will be my favorite part since I haven't been on a plane since
> > 1985 when I was eleven years old. I am looking forward to it.
> > Well, hope everyone has a great day.
> > Tim (Who wishes this trip was to try a new drug study)
> >
>

Is your daughter set on an IEP at school? the doctor shuld be able to have some
control in this matter. you really need to talk to your doctor and also get in
touch with the counselor and any special ed admins. the curriculum can be
altered, but they have to meet on it (an ARD meeting). There are other areas of
physical education she can get for diploma status.

I go through this on a regular basis for my daughter. You just have to talk or
get in touch with the right person. Granted, we are still in elem/Jr High, but
there is a way to get it taken care of without loss of credit.
 
Angela
 
I will walk the Breast Cancer 3 Day  November 6-8, 2009. Please donate.
Everyone deserves a lifetime!  I'M WALKING FOR YOU!!! To see my webpage and
donate, go to this link: 
 http://www.the3day.org/goto/AngelaJackson




________________________________
From: mymajc <mymajc@...>
To: fshsociety@yahoogroups.com
Sent: Thu, November 12, 2009 9:54:43 PM
Subject: Re: [fshsociety] Re: How to Go About Obtaining High School PE Exemption
for My Teen

 
Not neccessarily. PE tends to be part of the HS curriculum now days an a
required credit for a diploma.  Doctors notes my excuse her from some
activities but not the required classwork and testing.
Joanne

--- On Thu, 11/12/09, amandanorskog <amandanorskog@ gmail.com> wrote:

From: amandanorskog <amandanorskog@ gmail.com>
Subject: [fshsociety] Re: How to Go About Obtaining High School PE Exemption for
My Teen
To: fshsociety@yahoogro ups.com
Date: Thursday, November 12, 2009, 1:46 PM

 

The Doctor's note should suffice. Bring it to her school counselor and they
should put her in a different class. I did first semester PE my freshman year,
and second semester had is swapped for a cooking class (I think it's all that
was open during that period).

--- In fshsociety@yahoogro ups.com, "leandraco" <leandraco@. ..> wrote:
>
> My 15-year-old has progressed quickly over the past year and is struggling
with stairs, rising from a chair/floor and even walking. Most all of her muscle
groups are weaker at age 15 than mine are at 41. At the end of this term she is
supposed to begin PE, and from what I have heard and from reading the curriculum
there are many things she cannot do at all and most I don't feel she should even
attempt in the interest of avoiding acceleration of the progression of the
disease. Also, I'm not interested in putting her disabilities on display for
others and wish to avoid opportunities for peer ridicule. I have shared my
concerns with the physician who confirmed her diagnosis for us over this past
summer, and he has agreed to "send [us] a letter".
>
> Is there any sort of government or state form that I need to have him
complete? Maybe just a form from the school or a "letter" from him is
sufficient? Does anyone else have recent experience with this?
>
> Any help very greatly appreciated! :-)
>
> Leandra
>

[Non-text portions of this message have been removed]




[Non-text portions of this message have been removed]

Hi Tim and everyone else,

I was looking for info regarding this new study/research lab at the u of
Rochester. We visited  my daughters doc yesterday. She told me I should take my
daughter there, because she is such an "unusual case", and "she would be
interested in hearing what they have to say". My neuro (daughter's doc) says she
has never seen a child at this age with such progression as has taken place.

Now, this was brought up because she wants my daughter to have a G-Tube added. I
am against it. I have not seen any reason for this procedure to be conducted.
They seem to think otherwise due to a swallow study that was recently done, and
not completed I might add. The speech therapist doing the test said she had seen
enough. Aparantly the doc is reading somewhere in the report that it was too
dangerous to complete the test beyond the liquids. I didn't see that in the
report (my copy). this is supposed to be a specialist in speech and swallow
studies for neuro-muscular diseases. the person conducting the test never
inplicated that it was dangerous to complete. My daughter eats food, all kinds,
every day. She has not aspirated, nor has she had aspiration pneumonia, or any
other pneumonia for that matter.

Ok, getting back on the subject. This new research place for FSH, what kind of
place is it? What do they do? Would it be worth mine and my daughters time to
go? If so, is there any funds available for reimbursement or scholarships for
travel expenses? I would be intersted in going, but honestly, we are talking
about a lot of money that I don't have.

Can anyone give me any feedback?

Thanks
Angela






--- In fshsociety@yahoogroups.com, "timdbernard" <timdbernard@...> wrote:
>
> Hi all, hope everyone is doing well. I found out the other day that I
> will be going to Rochester University this summer for some testing. I
> guess it will be a muscle and skin biopsy, blood tests, dna test, and
> strength testing. I have never had the dna test so I am glad to be
> going. Have any of you been to the university before. I am a bit
> nervous but hopefully I can help the research process. Every little bit
> helps I am sure. From what I understand they have a new facility there
> for FSH so I bet it will be nice. Of course the plane ride there and
> back will be my favorite part since I haven't been on a plane since
> 1985 when I was eleven years old. I am looking forward to it.
> Well, hope everyone has a great day.
> Tim (Who wishes this trip was to try a new drug study)
>

November 13, 2009
FSH Society, Inc.

Scientists, patients, advocates, biotech and pharmaceutical companies, and
clinicians from throughout the world gathered at Boston Biomedical Research
Institute (BBRI) this week on November 9-10, 2009 to attend the FSH Society 2009
International Research Consortium and Research Planning Meetings for
facioscapulohumeral muscular dystrophy (FSHD).  Daniel Paul Perez, President and
co-founder of the FSH Society, organized the meetings that focused on
collaborating to find new treatments and cures for FSHD, which is the most
common adult form of muscular dystrophy affecting 1 in 14,000.  The meeting was
co-hosted by Dr. Charles P. Emerson, Jr., distinguished scientist and Director
of the Boston Biomedical Research Institute, and Co-Director, along with Dr.
Louis Kunkel of Harvard Medical School and Children's Hospital of the NIH Eunice
Shriver Kennedy NICHD Sen. Paul D. Wellstone MD CRC for FSHD.  Our scientific
clinical and research co-chairs were:  [clinical] Kathryn R. Wagner, M.D.,
Ph.D., Kennedy Krieger Institute, Baltimore, Maryland & The Johns Hopkins
University School of Medicine, Baltimore, Maryland  & NIH Eunice Kennedy Shriver
NICHD Boston Biomedical Research Institute Senator Paul D. Wellstone Muscular
Dystrophy Cooperative Research Center;  and, [research] Silvère van der Maarel,
Ph.D., Leiden University Medical Center, Leiden, the Netherlands  & Fields
Center for FSHD and Neuromuscular Research.

We had 87 researchers and clinicians from institutions across the US and around
the world, including Kennedy Krieger Institute, Johns Hopkins, University of
Milan, University of Sydney (Australia), AcceleronPharma, Genzyme, Novartis,
University of Washington, Ohio State University, University of Illinois, UMass,
University of Minnesota, University de Mons-Hainaut (Belgium), INSERM - Paris,
Nice, Marseille,  AFM, Leiden University Medical Center (Netherlands),
University of Nottingham (UK), University of Rochester, Muscular Dystrophy
Association (Tucson, AZ), University of California at Irvine, Genzyme, and
King's College London (in addition to Boston Biomedical, Children's Hospital and
Harvard Medical School as well as the FSH Society), among others.

Also joining the meetings were three program directors from the NIH:  Ljubisa
Vitkovic, Ph.D., program director for the Eunice Kennedy Shriver National
Institute of Child Health and Human Development (NICHD), John Porter, Ph.D.,
program director for the National Institute of Neurodegenerative Disorders and
Stroke (NINDS), and Glen Nuckolls, Ph.D., program director of the National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

Sponsors for the event included Acceleron Pharma, Association Francaise Contre
les Myopathies (AFM), Athena Diagnostics, The Fields Center at University of
Rochester, FSH Society, FSHD Global Research Foundation, Genomic Vision,
Genzyme, the NIH Eunice Kennedy Shriver NICHD, and Boston Biomedical Research
Institute Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research
Center.

It was a very successful workshop. And really was "the place to be" for FSHD
research. The atmosphere was very positive and constructive and all in
attendance felt that the mechanism of FSHD is becoming increasingly clear.  
Also was excellent to see that the interaction between the BBRI Wellstone MDCRC
for FSHD and Fields Center for FSHD are becoming stronger, evidenced by several
announcements and agreements to work jointly and collaboratively on projects. 
Also, excellent to see most all FSHD organizations working extremely well
together side by side in the common front to solve and treat FSHD.

We thank you for you financial support of the FSH Society, Inc. and its research
programs to make such significant progress possible.

For program and abstracts please see FSH Society, Inc. web site @:

http://www.fshsociety.org/assets/pdf/FSHSocietyIRC2009ProgramAbstracts.pdf

For organizer, hosts, and sponsors please see:

http://www.fshsociety.org/assets/pdf/IRC2009_Sponsor_Poster_09Nov09.pdf

Best,

Daniel Paul Perez
CEO
FSH Society, Inc.

Thanks for all the input and advice regarding attending the convention next
year. I will definitely go and am looking forward to meeting those of you who
attend.

Wendy



________________________________
From: amy_b90 <finhorizon@...>
To: fshsociety@yahoogroups.com
Sent: Thu, November 12, 2009 2:39:25 PM
Subject: [fshsociety] Re: Vegas convention

 
You may find it very worthwhile to attend. Although it may at first seem painful
to see so many of us with this disease it's also enlightening to see how well
most of us thrive. Being the spouse of someone with a disease is often
isolating. Not only will you find the content uplifting but you will be inspired
by the other families & spouses. Afterall it's not only your husband's disease.
His trials & tribulations are yours as well. I hope you do attend.

--- In fshsociety@yahoogro ups.com, "wendy10755" <wendy10755@ ...> wrote:
>
> My husband is considering attending the FSH convention in Vegas next year. I'm
wondering if you veterans could tell me - is it worth me attending as well? Is
there content included for family members? Do spouses often attend?
>
> Thanks!
> Wendy
>







[Non-text portions of this message have been removed]

Not neccessarily. PE tends to be part of the HS curriculum now days an a
required credit for a diploma.  Doctors notes my excuse her from some
activities but not the required classwork and testing.
Joanne

--- On Thu, 11/12/09, amandanorskog <amandanorskog@...> wrote:


From: amandanorskog <amandanorskog@...>
Subject: [fshsociety] Re: How to Go About Obtaining High School PE Exemption for
My Teen
To: fshsociety@yahoogroups.com
Date: Thursday, November 12, 2009, 1:46 PM


 



The Doctor's note should suffice. Bring it to her school counselor and they
should put her in a different class. I did first semester PE my freshman year,
and second semester had is swapped for a cooking class (I think it's all that
was open during that period).

--- In fshsociety@yahoogro ups.com, "leandraco" <leandraco@. ..> wrote:
>
> My 15-year-old has progressed quickly over the past year and is struggling
with stairs, rising from a chair/floor and even walking. Most all of her muscle
groups are weaker at age 15 than mine are at 41. At the end of this term she is
supposed to begin PE, and from what I have heard and from reading the curriculum
there are many things she cannot do at all and most I don't feel she should even
attempt in the interest of avoiding acceleration of the progression of the
disease. Also, I'm not interested in putting her disabilities on display for
others and wish to avoid opportunities for peer ridicule. I have shared my
concerns with the physician who confirmed her diagnosis for us over this past
summer, and he has agreed to "send [us] a letter".
>
> Is there any sort of government or state form that I need to have him
complete? Maybe just a form from the school or a "letter" from him is
sufficient? Does anyone else have recent experience with this?
>
> Any help very greatly appreciated! :-)
>
> Leandra
>











[Non-text portions of this message have been removed]

You may find it very worthwhile to attend. Although it may at first seem painful
to see so many of us with this disease it's also enlightening to see how well
most of us thrive. Being the spouse of someone with a disease is often
isolating. Not only will you find the content uplifting but you will be inspired
by the other families & spouses. Afterall it's not only your husband's disease.
His trials & tribulations are yours as well. I hope you do attend.

--- In fshsociety@yahoogroups.com, "wendy10755" <wendy10755@...> wrote:
>
> My husband is considering attending the FSH convention in Vegas next year. 
I'm wondering if you veterans could tell me - is it worth me attending as well? 
Is there content included for family members?  Do spouses often attend?
>
> Thanks!
> Wendy
>

The Doctor's note should suffice. Bring it to her school counselor and they
should put her in a different class. I did first semester PE my freshman year,
and second semester had is swapped for a cooking class (I think it's all that
was open during that period).

--- In fshsociety@yahoogroups.com, "leandraco" <leandraco@...> wrote:
>
> My 15-year-old has progressed quickly over the past year and is struggling
with stairs, rising from a chair/floor and even walking.  Most all of her muscle
groups are weaker at age 15 than mine are at 41.  At the end of this term she is
supposed to begin PE, and from what I have heard and from reading the curriculum
there are many things she cannot do at all and most I don't feel she should even
attempt in the interest of avoiding acceleration of the progression of the
disease.  Also, I'm not interested in putting her disabilities on display for
others and wish to avoid opportunities for peer ridicule.  I have shared my
concerns with the physician who confirmed her diagnosis for us over this past
summer, and he has agreed to "send [us] a letter".
>
> Is there any sort of government or state form that I need to have him
complete? Maybe just a form from the school or a "letter" from him is
sufficient? Does anyone else have recent experience with this?
>
> Any help very greatly appreciated! :-)
>
> Leandra
>

My answer is essentially the same as Jeri's - yes, yes and yes. We would love to
see you both.

Ray :-)

   ----- Original Message -----
   From: Jeri
   To: fshsociety@yahoogroups.com
   Sent: Thursday, November 12, 2009 8:45 AM
   Subject: [fshsociety] Re: Vegas convention



   My reply to this is yes, definately do attend with your husband. It shows your
support for one thing, but it is a place to learn, to meet people, there are
some short sessions, one of which is for caregivers. All in all, it is an
enjoyable time. Yes, spouses usually do attend, but it isn't a must. I hope you
do!
   Jeri (who will be there, with my husband)

   --- In fshsociety@yahoogroups.com, "wendy10755" <wendy10755@...> wrote:
   >
   > My husband is considering attending the FSH convention in Vegas next year.
I'm wondering if you veterans could tell me - is it worth me attending as well?
Is there content included for family members? Do spouses often attend?
   >
   > Thanks!
   > Wendy
   >





[Non-text portions of this message have been removed]

I work as an educational advocate in Michigan....the answers will pertain to
what state you are in.
In Michigan, there is adaptive PE. Don't know about your HS but ours has a work
out equipment that and an individualized program could be set up.  I would
request an meeting with the Principal to talk about an IEP under Physically
impaired eligibility  or 504 PLAN for
for accommodations.   It might be a good idea to get one of the plans in place
for other accommodations such as Assistive Technology ( special computer
programs rather than handwriting, extra time in passing or leaving before or
after the bell to avoid the jostling crowd of HS halls, books on tape if vision
becomes an issue etc. 
Joanne
On Wed, 11/11/09, leandraco <leandraco@...> wrote:


From: leandraco <leandraco@...>
Subject: [fshsociety] How to Go About Obtaining High School PE Exemption for My
Teen
To: fshsociety@yahoogroups.com
Date: Wednesday, November 11, 2009, 8:44 PM


 



My 15-year-old has progressed quickly over the past year and is struggling with
stairs, rising from a chair/floor and even walking. Most all of her muscle
groups are weaker at age 15 than mine are at 41. At the end of this term she is
supposed to begin PE, and from what I have heard and from reading the curriculum
there are many things she cannot do at all and most I don't feel she should even
attempt in the interest of avoiding acceleration of the progression of the
disease. Also, I'm not interested in putting her disabilities on display for
others and wish to avoid opportunities for peer ridicule. I have shared my
concerns with the physician who confirmed her diagnosis for us over this past
summer, and he has agreed to "send [us] a letter".

Is there any sort of government or state form that I need to have him complete?
Maybe just a form from the school or a "letter" from him is sufficient? Does
anyone else have recent experience with this?

Any help very greatly appreciated! :-)

Leandra











[Non-text portions of this message have been removed]

My 15-year-old has progressed quickly over the past year and is struggling with
stairs, rising from a chair/floor and even walking.  Most all of her muscle
groups are weaker at age 15 than mine are at 41.  At the end of this term she is
supposed to begin PE, and from what I have heard and from reading the curriculum
there are many things she cannot do at all and most I don't feel she should even
attempt in the interest of avoiding acceleration of the progression of the
disease.  Also, I'm not interested in putting her disabilities on display for
others and wish to avoid opportunities for peer ridicule.  I have shared my
concerns with the physician who confirmed her diagnosis for us over this past
summer, and he has agreed to "send [us] a letter".

Is there any sort of government or state form that I need to have him complete?
Maybe just a form from the school or a "letter" from him is sufficient? Does
anyone else have recent experience with this?

Any help very greatly appreciated! :-)

Leandra

Sheri,

Thanks. It's been years since our MDA/University Clinic suggested they could
have a brace custom made -- which at the time was way-overkill (and too
expensive). Even now I just need a little support; though, some sort of
mechanical spring-hinge, might be less stiff in the wrong directions. ??? My
ankles sometimes hurt for no discernible reason. I might re- search the internet
again, to see what's now out there.

--jim


sherioverton wrote:

  Jim, after years of buying prescribed but worthless braces for my son, I too
have been very resistant to braces. But I finally gave in two years ago to my
doc and agreed to try a newer type. I have to admit that it helps a lot, both in
keeping me from tripping and it eliminates pain in my ankle for some reason I
don't fully understand. But it isn't the plastic L type. This is made of
ultra-light graphite under my foot and attaches to a plastic piece on the
*front* side. This brace guy is at a big university rehab center, and apparently
you need to go to somebody who is alittle more research-based than your average
guy, so they can really assess which model does what you need.
>

http://www.newsdaily.com/stories/tre5aa3zy-us-genetherapy-muscles/

Posted 2009/11/11 at 2:42 pm EST

Gene therapy strengthens muscles in monkeys

WASHINGTON, Nov. 11, 2009 (Reuters) — A gene therapy treatment that stops the
breakdown of muscle appeared safe in monkeys and may build up muscle, too,
researchers reported on Wednesday.

The approach is being developed in the hope of treating severe muscle weakness
caused by multiple sclerosis, muscular dystrophy and neurodegenerative diseases,
but progress is slow in part because of fears about its safety.

Janaiah Kota of the Center for Gene Therapy at Nationwide Children's Hospital in
Columbus, Ohio, and colleagues used an engineered virus called an
adeno-associated virus to carry a gene into the leg muscles of healthy monkeys.

The gene causes cells to produce human follistatin, which interferes with
another compound called myostatin. Myostatin breaks down muscle, so in theory
adding follistatin should encourage muscles to grow.

The new gene therapy went safely into the muscles of the monkeys and within
three months, the monkeys' muscles were growing bigger, the researchers reported
in the journal Science Translational Medicine.

The effects lasted for at least 15 months, they said. This is important for
treating lifelong diseases such as MS and muscular dystrophy.

No other organs appeared to be affected, they said. "Our results, together with
the findings in mice, suggest that therapy with AAV1-FS344 may improve muscle
mass and function in patients with certain degenerative muscle disorders," they
wrote. But they noted the animals are experimental models only.

"Despite the beneficial effects of follistatin gene therapy that we demonstrated
in macaques, these animals did not have a degenerative muscle disease, and so
our findings may not translate successfully to clinically effective treatments
for such diseases," they wrote.

Gene therapy is a promising field that has been dogged by failure. In 1999, an
18-year-old volunteer in a gene therapy trial died and later two French boys
developed leukemia, both cases a direct result of the gene therapy.

However, this year U.S. gene therapy researchers restored partial sight in 12
patients with a rare inherited disease called Leber congenital amaurosis and
French researchers stopped a rare and fatal illness called X-linked
adrenoleukodystrophy or ALD in two boys.

(Editing by Vicki Allen)



       Découvrez les styles qui font sensation sur Yahoo! Québec Avatars.
http://cf.avatars.yahoo.com/

My reply to this is yes, definately do attend with your husband.  It shows your
support for one thing, but it is a place to learn, to meet people, there are
some short sessions, one of which is for caregivers.  All in all, it is an
enjoyable time.  Yes, spouses usually do attend, but it isn't a must.  I hope
you do!
Jeri (who will be there, with my husband)

--- In fshsociety@yahoogroups.com, "wendy10755" <wendy10755@...> wrote:
>
> My husband is considering attending the FSH convention in Vegas next year. 
I'm wondering if you veterans could tell me - is it worth me attending as well? 
Is there content included for family members?  Do spouses often attend?
>
> Thanks!
> Wendy
>

My husband is considering attending the FSH convention in Vegas next year.  I'm
wondering if you veterans could tell me - is it worth me attending as well?  Is
there content included for family members?  Do spouses often attend?

Thanks!
Wendy

Please post the link to the article when it's online. A group of us here in So.
Cal. are in the talking stages for a similar fund raiser and would love to use
"your wheel" (rather than invent our own ;-0).

--- In fshsociety@yahoogroups.com, "born2limp" <born2limp@...> wrote:
>
> Paul and Amy:
> Thanks and I have written up a "how-to" of sorts -- or maybe, a "how it went."
> The health editor at the daily newspaper where I work, the Cape Cod Times
(Hyannis, MA), asked me to write up first-person account of putting together the
Walk 'N' Roll,as there are a lot of similar events on the Cape. It will run this
month, and you'll be able to see it online at www.capecodonline.com when it's in
print.
> Nancy Van Zant has also asked me to go to the FSH convention in Vegas next
year and discuss the fund-raising event. I told her I would.
> I'll also be looking to refine and improve the process, which I'll be starting
up this month with an application to the state to do it again next Columbus Day
weekend. Ideas and assistance welcome.
> Rich
>
> --- In fshsociety@yahoogroups.com, "paul_from_florida" <Paullstann@> wrote:
> >
> > Kudos to you Rich, and thanks.
> >
> > Paul
> >
> >
> >
> >
> > --- In fshsociety@yahoogroups.com, "amy_b90" <finhorizon@> wrote:
> > >
> > > Congratulations Rich! You are an inspiration to us all. Maybe you could
write up a sort of syllabus as to how you accomplished your event so that others
can learn from your success.
> > >
> > > --- In fshsociety@yahoogroups.com, "born2limp" <born2limp@> wrote:
> > > >
> > > > I just wanted to thank everyone who donated to, participated in or
spread the word about the Oct. 10 event in Brewster, MA. We raised about $15,000
for the FSH Society, and about 50 people participated. These included 3 people
in wheelchairs and others, like me, with FSHD. We even attracted a local family
who had not previously been involved with the Society, and they gained a lot of
info and contacts. So we helped someone immediately.
> > > > This will be an annual event. Check out the Society's web site for the
link to the Facebook page of photos. If you want to help with next year's event,
please contact me or Nancy Van Zant at the Society.
> > > > Thanks,
> > > > Rich Holmes, event chairman
> > > > richwh@
> > > >
> > >
> >
>

Jim, after years of buying prescribed but worthless braces for my son, I too
have been very resistant to braces. But I finally gave in two years ago to my
doc and agreed to try a newer type. I have to admit that it helps alot, both in
keeping me from tripping and it eliminates pain in my ankle for some reason I
don't fully understand. But it isn't the plastic L type. This is made of
ultra-light graphite under my foot and attaches to a plastic piece on the
*front* side. This brace guy is at a big university rehab center, and apparently
you need to go to somebody who is alittle more research-based than your average
guy, so they can really assess which model does what you need.

Eur J Hum Genet. 2009 Nov 4.
Analysis of allele-specific RNA transcription in FSHD by RNA-DNA FISH in single
myonuclei.

Masny PS, Chan OY, de Greef JC, Bengtsson U, Ehrlich M, Tawil R, Lock LF, Hewitt
JE, Stocksdale J, Martin JH, van der Maarel SM, Winokur ST.

[1] Department of Biological Chemistry, University of California, Irvine, CA,
USA [2] Department of Neurology, University of Colorado, Denver, CO, USA.

Autosomal dominant facioscapulohumeral muscular dystrophy (FSHD) is likely
caused by epigenetic alterations in chromatin involving contraction of the D4Z4
repeat array near the telomere of chromosome 4q. The precise mechanism by which
deletions of D4Z4 influence gene expression in FSHD is not yet resolved.
Regulatory models include a cis effect on proximal gene transcription (position
effect), DNA looping, non-coding RNA, nuclear localization and trans-effects.

To directly test whether deletions of D4Z4 affect gene expression in cis,
nascent RNA was examined in single myonuclei so that transcription from each
allele could be measured independently. FSHD and control myotubes
(differentiated myoblasts) were subjected to sequential RNA-DNA FISH. A total of
16 genes in the FSHD region (FRG2, TUBB4Q, FRG1, FAT1, F11, KLKB1, CYP4V2, TLR3,
SORBS2, PDLIM3 (ALP), LRP2BP, ING2, SNX25, SLC25A4 (ANT1), HELT and IRF2) were
examined for interallelic variation in RNA expression within individual
myonuclei. Sequential DNA hybridization with a unique 4q35 chromosome probe was
then applied to confirm the localization of nascent RNA to 4q. A D4Z4 probe,
labeled with a third fluorochrome, distinguished between the deleted and normal
allele in FSHD nuclei.

Our data do not support an FSHD model in which contracted D4Z4 arrays induce
altered transcription in cis from 4q35 genes, even for those genes (FRG1, FRG2
and SLC25A4 (ANT1)) for which such an effect has been proposed.