Volunteers are needed to fill out a short questionnaire. Please read
this consent form completely and then click on the link below if you
would like to participate.

UNIVERSITY OF NORTHERN IOWA
HUMAN PARTICIPANTS REVIEW
RECRUITMENT LETTER / INFORMED CONSENT

Parent/Caregiver Reports for a Children’s Tracheostomy Themed Book

You are invited to participate in a research project conducted through
the University of Northern Iowa. The University requires that you give
your agreement to participate in this project. The following
information is provided to help you make an informed decision whether
or not to participate.

The purpose of the study is to gather information from
parents/caregivers of children who have tracheostomy tubes in order to
create a storybook that includes a child character with a
tracheostomy. If you decide to participate, you will be asked to fill
out a survey. The completed surveys will be reviewed and data obtained
may be used to influence the storyline, characters, and concepts of
the storybook. The time needed to complete the survey is estimated to
be 15 minutes.

Participating in this study may be of benefit by educating others
about children who have tracheostomies. There are minimal risks
associated with participating in this study. You may feel discomfort
in asking to provide information relating to your child who likely has
had a significant medical history. You do not have to answer questions
you do not feel comfortable with and may quit taking the survey at
anytime. Any identifying information obtained will be kept
confidential. All participants will be assigned a code which will be
kept in a locked file in the faculty advisors office. You can choose
to be put in a drawing to receive a complimentary copy of the
completed book. Information gathered from this study will be destroyed
upon completion and presentation of book. Participation in this study
is entirely voluntary. If you agree to participate in this study, you
are free to withdraw at any time without penalty. If you have a family
member who attends the Roy Eblen Speech and Hearing Clinic (RESHC),
your withdrawal from the study will not in any way affect your family
member’s status as a client in the RESHC.

If you have any questions about this research please feel free to
contact the principal investigator, Elizabeth A. Bennett or the
facility advisor, Dr. Angela Burda, at (319) 273-2496. You can also
contact the office of the Human Participants Coordinator at the
University of Northern Iowa, at (319) 273-6148, for answers to
questions about rights or research participants and the participant
review process.

By clicking on the link to the survey below, you understand that you
are fully aware of the nature and extent of your participation in this
project as stated above and the possible risks arising from it. You
hereby agree to participate in this project. You acknowledge that you
have received a copy of this consent statement, and that you are 18
years of age or older.

http://www.surveymonkey.com/s.aspx?s...dLqHDCmA_3d_3d

For those of you who were planning on attending the trachcare fall
picnic, you know that we got rained out.  Below is information with a
new date; October 11th.  Hopefully the weather will cooperate this
time!

Davis Farmland is in Sterling, Massachusetts:
http://www.davisfarmland.com/new-site/index.html

Cindy Bissell
tracheostomy.com


---------- Forwarded message ----------
From:  <info@...>
Date: Mon, Sep 22, 2008 at 8:28 PM
Subject: New, SAVE-THE-DATE for TrachCare Fall Picnic
To: info@...


Dear Families,
We have re-scheduled the Fall Picnic at Davis' Farmland for Saturday,
October 11, 2008. We hope you all can make this new date and that the
weather cooperates this time. We would like to ask you all to please
RSVP again so we know if you and your families can indeed make this
new date. Please RSVP by October 6th.
Once again, please e-mail info@... or call Leslie at
617-875-7748 and provide the names of all attending in your party and
the ages of each of the children under 18.
Admission is $10 per adult; kids are free. Your name at the gate will
get you in the park where you can reimburse TrachCare for the adult
admissions. We will be having a potluck, so bring a dish to share,
bring lunch for yourselves, or purchase lunch at the park concession
stand. There's lots to do at Davis' Farmland, and your admission gets
you into the apple orchard for apple picking afterward. We are
inviting the reporter from The Boston Globe back, so hopefully they
can make this new date and TrachCare will be known to everyone. We
also plan to debut the premiere issue of the new TrachCare newsletter!
Come join the fun! See you at the farm!
Leslie, Julie, Erin and Josephine


--
Sincerely,
Cindy Bissell
http://www.cindy.tc

Sunday, Sept. 14, 2008

Davis' Farmland
145 Red Stone Hill Rd.
10:30 am - 2:30 pm
Sterling, MA 01564
Potluck lunch starts at 11:30

Please RSVP by Sept, 9th. 2008, with names of those attending and ages
of children so they will be available at the gate.
Send RSVP to info@... or call Leslie at 617-875-7748.
Admission is $10 for adults, payable to TrachCare. No charge for
children. This group admission rote Includes visits to the Animal
Showcase, the Satan Hayride and the orchard where you can pick fresh
apples from the free. Bring your own lunch or food to share and join
our potluck! TrachCare will provide drinks and eating utensils under
our reserved tent.

Rain date TBD; call Davis' Farmland at 978-421-M000 (6666) the day of
the picnic if you suspect it may be rained out

http://www.trachcare.org

We had a wonderful time last year!  This year the Boston Globe will be
there interviewing and taking pictures, so a good opportunity to
promote public awareness.  Hope to see you at the farm!

--
Sincerely,
Cindy Bissell
www.tracheostomy.com

Is your child featured on the "kids with tracheostomies" section of
Aaron's Tracheostomy Page?

The all new "Kids with Tracheostomies" site is up and running! The new
site is an interactive community where parents can create and update
their own kids pages and blog their progress.

The new site is at:  http://www.trachkids.org

All of the kids from the old site have already been moved to the new site.
*To avoid duplications, PLEASE EMAIL ME for your user name and
password. (cindy.bissell@...)

If your child is not on the old site, feel free to apply for a new account.

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com
www.trachkids.org

The Third National Tracheostomy.com Pediatric Conference brochure
information is now available online:
http://www.tracheostomy.com/networking/conferences/third/brochure.htm

You can also download the brochure as a PDF, but the most important thing is
to download the Registration form and get it mailed in. There are a limited
number of rooms reserved at the hotel, so book your room early to guarantee
yourself the group rate.

We have a great program planned and I promise you, you won't come away from
the conference disappointed. Ann and I look forward to seeing many of you!

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Below is a message from our conference coordinator Ann Schrooten.  I hope to
meet some of you from the listservs, as well as the message boards.  Even if
you are not able to attend, please do send photos to Ann ASAP.
Question?  Email me (cindy@...) or Ann (schrooten1@...)
Thanks!

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com


The Third Tracheostomy.com Pediatric Conference, June 12-14 2008,
Cincinnati, OH.

Hotel: probably the Marriott at the airport - but haven't signed the
contract yet.

Events:
Newport Aquarium - Thursday (6/12/08) for a meet and greet. We have this
place all to ourselves and I hear it's awesome.

For those of you who see Dr. Cotton and his team: I mentioned to Dr. Cotton
that many people will be planning their follow-up bronchs around the
conference dates. I believe they are trying to make sure they can
accommodate those who are doing this -- as far as schedules and OR time. My
advice is to schedule early and mention the conference if you are trying to
combine the two events.

Video -- For every conference, I usually put together a video to play at the
Gala. It is reflective of the parents and children here on the trach board
because, after all, it is the "Tracheostomy.com Pediatric Conference".
Therefore, I'm once again in need of pictures. If you would like to be part
of the video - please email me pictures of you, your children, you and your
children, and you with other members of the trach board. It takes a few
months to put the video together, so please start emailing pictures now.
(schrooten1@...).

This looks to be a fantastic conference and is expected to be well attended.
I look forward to seeing many new faces.
__________________
Ann-mom to Jack-9 yrs old;vent dependent;congenital muscular dystrophy; also
mom to Hilary (17); Mary (14) and Eric (5)
http://www.jack-schrooten.blogspot.com/
http://www.thewillowtreefoundation.org/

May you have a healthy, happy New Year!

This year's Bissell holiday card photo at:
http://img.photobucket.com/albums/v215/bissells/xmas_card.jpg


Sincerely,
Cynthia Bissell
www.bissells.com

I wanted to let everyone know that a new "pocket guide" edition of the
Pediatric Tracheostomy Home Care Guide is now available via Jones and
Bartlett Publishers at:  http://tinyurl.com/2yuu4r

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Sorry for the cross post, but I thought this might be fun. I've been playing
around with a map site called Frappr.com. This site is being used on some
other support groups such as the our-kids listserv and it is very popular.
I'm thinking this can be a place where members can map their location, so we
can all see where in the world our trach kids are located. For those of you
who don't mind pinpointing yourself on a map for all the world to see, check
it out at:

http://www.tracheostomy.com/map/index.htm

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

This is a forward from the tracheostomy.com pediatric conference coordinator
Ann Schrooten:

Although the deadline has "technically" passed to register for the
conference, I have received several phone calls this week from people who
just found out about the conference.  You can still register - but you will
need to fax or email me your registration form ASAP.  People have been
contacting the hotel to get information about the conference and the hotel
has been giving out my work number  :O   So, I may as well give it out for
anyone who wants to late-register --- call me at work:

(520) 426-3824

Thanks,
Ann


P.S. More info about the conference and download a registration for at:
http://www.tracheostomy.com/announcements/index.htm

The Conference Brochure with all the information and registration form is
now available online at:
http://www.tracheostomy.com/announcements/index.htm
It's now time to make your reservations!

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

For those of you in the Boston area, there is a new TRACH (Together
Respecting & Advancing Children's Health) CARE support group!  The first
open meeting will be Saturday, May 21, 2005 from 10:00A.M. - 12:00P.M. in
Brookline, MA.
See the flyer for directions and contact info:

http://www.tracheostomy.com/announcements/trachcare_meeting.htm

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

The next (second) tracheostomy.com Conference is slated for June 1-3, 2006.
Mark your calendars now. It will be held in St. Louis again. Dr. Cotton has
already been booked and will be there.  Will send more information as it
becomes available.  The first conference was a great success
(http://www.tracheostomy.com/trachkids/get_together/conference/index.htm).
This conference is again being organized by Ann Schrooten (Jack's Mom:
http://www.tracheostomy.com/trachkids/kids14/jack_s.htm).

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

From the Bissell Family

Sincerely,
Cindy Bissell
www.bissells.com
www.tracheostomy.com

Dear Group,

As of November 1, you will no longer be able to reach me at
cbissell@....  Please use cindy@.... Apologies
for any inconvenience.

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Here's the link to Ann Schrooten's video entitled "Hero", which was shown at
the Tracheostomy Conference Friday Night Gala.  A lot of the pictures are
from the "Kids with trachs" section.  The file is 16MB, so will take a while
to download via a 56K modem.

ftp://ftp.bissells.com/pub/hero.wmv

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

First Tracheostomy.com Pediatric Conference,
St. Louis, Missouri,
June 3-5, 2004

WOW!!!  What a fabulous weekend.  So much about this conference impressed
me.  First and foremost, Ann and Karen did a super job organizing this
event.  Everything went so smoothly, a nice combination of learning,
networking, support and fun.  All of the speakers were excellent.  It was a
thrill for me to meet Dr. Cotton.  He is a very nice man, with a great sense
of humor. I was also quite impressed by the parents of children who are
ventilator dependent.  Having a child with a trach is challenging enough,
but adding a vent into the picture is a whole lot more work and stress!  I
was also happy to see so many dads in attendance.

I have gotten so much support and inspiration for networking with parents
on-line via email, listservs and message boards over the years, but meeting
people face-to-face is truly something special.  It was nice to be at a
place where people have a real understanding of what parents of kids with
special needs deal with on a daily basis.  And for parents of kids with
tracheostomies, this was an extra-special gathering.  Where else can you go
where the sound of a suction machine is hardly even noticed?  Or where you
can actually grab the wrong suction machine to suction your child! :-)
Every time a vent alarm sounded, you had to look around at the many
vent-dependent children to see who actually needed attention.

As I have said many times, information is important, but knowing you are not
alone is often most helpful.  As a parent of three children with special
needs, I have found networking with other parents of children with special
needs vital to keeping ones sanity!  It is the parents of children with
tracheostomies who have made Aaron's Tracheostomy Page so successful, by
sharing your children's stories, participating on the listservs and posting
to the message boards.

Aaron and I had the time of our lives and we would like to thank all of you
for your positive feedback regarding Aaron's Page.  Your kind words make all
of the work worthwhile.  I have returned with a renewed sense of purpose and
lots of ideas to make tracheostomy.com even better! Thank you also for the
beautiful plaque, which I will treasure for the rest of my life. Thank you
to all who contributed to this very special gift. Thanks also to Scott for
donating cherry stool, which made a lovely door prize for a lucky
grandparent of a child with a trach.

For those interested, I have posted some of my photos at:
http://community.webshots.com/album/150479962hpfdZx
I will also be adding a conference section to Aaron's Page soon.

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Dear Group,

Just a reminder that the First Tracheostomy.com Pediatric Conference
deadline for applications is May 15th!  So, if you plan to attend the
conference and have not yet sent in an application, please do so ASAP.

The conference coordinators Ann Schrooten and Karen Stempfel have lots of
great speakers (including Dr. Cotton) and fun activities planned for the
entire family.  Hope to see you in St. Louis!

Complete conference information and applications are at:
http://www.tracheostomy.com/conference

First Tracheostomy.com Pediatric Conference
June 3-5, 2004
St. Louis, Missouri


Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Dear Group,

Plans are now in place for the "First Tracheostomy.com Pediatric Conference"
to be held in St. Louis, Missouri, June 3-5, 2004.

Go to:  http://www.tracheostomy.com/conference/index.htm for conference
information and updates.

Question regarding this conference, please email the conference coordinator
Ann Schrooten at schrooten1@....

Aaron and I will be attending, hope to meet some of you in St. Louis!

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

May the Magic of the Season be with you!

The Bissell's
www.bissells.com

Thought you would all be interested to know that I've just added the
300th child to the "Kids with Tracheostomies" section of Aaron's
Tracheostomy Page!  WOW, quite a milestone. Thank you again to all of
you who have shared your amazing children and their stories!  Your
triumphs, tragedies and everyday struggles are such and inspiration and
an education to so many.  The happy endings give hope, while the
challenges and sad loses help to put life in perspective.  The
children's stories and photos are such a wonderful resource and a means
of parent-to-parent networking, thanks to all of you!

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Hi All,

I was just sent a copy of an adorable new Children's Book about a child
who has a tracheostomy.  The book is written by the boy's grandmother.
Here is a description of the book:

"Just Like You" is about a little boy getting ready for his first day of
pre-school. You will meet his mommy, big brother and sister and also
some of the animals on his farm and oh yes, you will learn about his
trach. Mommy and big sister go to school and explain to the children
about Slade's trach. The kids ask questions and mommy answers in easy to
understand language. Why does it sound like that, can he eat, can he
talk, etc. The kids not only learn about a trach, but they also learn a
very valuable lesson, though I may look different on the outside, I'm
Just Like You on the inside.

This hard cover, beautifully illustrated book was written because of a
need for all kids, as well as adults, to learn about the tracheostomy.
Whether your child has a trach or if you just want your child to learn
about others this is a very cute and meaningful book.

Books are $16 each and can be ordered via snail mail with check or money
order.  This book is worth recommending, and so I've added an order form
to Aaron's Page at:
http://www.tracheostomy.com/resources/books/just_like_you/index.htm

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Hi All,

I wanted to let you all know that I am in the process of moving Aaron
Tracheostomy Page and it's message boards to a new server.  We have
out-grown our current account and in order to get more space, everything
needs to be moved to a new server.  I do not anticipate any problems or
disruption, with the exception of the message boards.  Moving the boards
is a bit complicated and they will need to be shut down temporarily
while the rather large database is moved.

I would like to take this opportunity to thank Michelle Brose at
http://www.retrofit.net/ for volunteering her time, as the message board
an it's programming are beyond my level of expertise.  Michelle will be
upgrading the software and moving the boards and database to the new
account (the board will also have a new address at tracheostomy.com) She
plans to shut down the board tonight at midnight EST.  Will let everyone
know when the move is complete and the boards are up and running again.
Apologies for any inconvenience.

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

A family in Croatia, Europe is looking for equipment.  It is my
understanding that this family must buy equipment in order to take their
child home.  Below is Karla's page and the email I received from her family.
If anyone can help, their email address is: tomislav.benko@...


Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

http://www.tracheostomy.com/trachkids/kids14/karla.htm

>>Thank you very much that you bring Karla to your family of tracheostomy
kids. In my first letter I asked can you help us to find her a ventilator.
We need to buy a ventilator machine, all the monitors, oximeter, and all the
stuffs to bring her home. It's the only way. Please, help us to find one to
buy, or if you can email us a catalogue of the ventilators with the prices.
We don't even know how much it costs! We know that is a lot of money, but we
must bring her home. I have some family in USA (California), so if you find
one we could transported. Help us! And thank you again! We are so happy to
see her with all those kids like her.<<

I wanted to take a minute to wish all of my trach kids a HEALTHY, happy
holiday season!
Attached is a Christmas picture of my three boys.  All are 9 years old and
can't wait for Santa!

Sincerely,
Cindy Bissell
More than you ever wanted to know about the Bissell's at www.bissells.com
Aaron's Tracheostomy Page:  www.tracheostomy.com