Hi Sharmini,
The purpose of the Cooperative Agreement, as stated in the guidance, is
to "address the need to maintain and/or enhance the involvement of
parents and families in the genetic screening service system."
What we plan on doing for our project is to conduct focus groups with
representatives of various populations, including Sudanese, Native
American, African American, Latino, future parents, adoptive parents,
parents of children with a diagnosed disorder, parents of children with
a false positive screen, hearing parents of children with a hearing
loss, and deaf parents of children with a hearing loss, and others. We
also plan on sending surveys to NBS providers - OB/GYNs, Pediatricians,
and Family Practitioners. All to determine their perceptions of NBS
programs, and to solicit participation in an "Information & Education
Committee" that would participate in the planning, implementation, and
evaluation of NBS programs. 
I will attach our logic model, as well as a sample letter of support for
your consideration.
Thanks for asking!
Piper

Kimberly Noble Piper
State Genetics Coordinator
Center for Congenital and Inherited Disorders
Iowa Department of Public Health
321 E. 12 th Street
Des Moines, IA 50319-0075
515-281-6466
1-800-383-3826
Fax 515-242-6013
[log in to unmask] <mailto:[log in to unmask]> 
http://www.idph.state.ia.us/genetics/default.asp
<http://www.idph.state.ia.us/genetics/default.asp> 
<http://www.idph.state.ia.us/ch/family_health.asp>  


-----Original Message-----
From: Communication for the Heartland Regional Genetics Group
[mailto:[log in to unmask]] On Behalf Of Sharmini Rogers
Sent: Friday, January 05, 2007 3:52 PM
To: [log in to unmask]
Subject: Re: HRSA grant Consumer Initiative for Genetic Resources and
Services


Kim,
I have had so many different proposals sent my way, I am not sure which
one is this.  Please send me some information about it.  Thanks


Dr. Sharmini V. Rogers, MBBS, MPH, Chief
Bureau of Genetics and Healthy Childhood
Section for Healthy Families and Youth
Division of Community and Public Health
Missouri Department of Health and Senior Services
930 Wildwood Drive
Jefferson City MO 65109
E-mail: [log in to unmask]
Tel: 573-751-6214

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>>> [log in to unmask] 1/5/2007 1:37 PM >>>
Dear Members of the Heartland Regional Genetics and Newborn Screening
Collaborative, Many of may have received a request via the Genetic
Alliance listserve for letters of support for their grant application
for this RFP. Please be aware that Iowa is also writing a proposal for
this RFP, and plans to share all of its work with the Collaborative on
an ongoing basis. 
Lori  Williamson has agreed to provide a letter of support for the Iowa
proposal on behalf of the Collaborative. 
We would definitely appreciate your support for our proposal as well. If
you would like to know more about our planned proposal, please contact
me. 
I will also be calling Sharon Terry at the Genetic Alliance to see if
there is some way we could collaborate on this effort. 
Thanks for your understanding, and please call me with comments or
questions. Kim Piper
 
Kimberly Noble Piper
State Genetics Coordinator
Center for Congenital and Inherited Disorders
Iowa Department of Public Health
321 E. 12 th Street
Des Moines, IA 50319-0075
515-281-6466
1-800-383-3826
Fax 515-242-6013
[log in to unmask] <mailto:[log in to unmask]> 
http://www.idph.state.ia.us/genetics/default.asp 
<http://www.idph.state.ia.us/genetics/default.asp> 
<http://www.idph.state.ia.us/ch/family_health.asp>  
 


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This email message and its attachments may contain confidential information that is exempt from disclosure under Iowa Code chapters 22, 139A, and other applicable law.  Confidential information is for the sole use of the intended recipient.  If you believe that you have received this transmission in error, please reply to the sender, and then delete all copies of this message and any attachments.  If you are not the intended recipient, you are hereby notified that any review, use, retention, dissemination, distribution, or copying of this message is strictly prohibited by law.