The Alexis Foundation for Premature Infants and Children
and
Parents of Premature Babies (Preemie-l)

are pleased to announce

Directions for the 21st Century
Bridging the gap between parents and professionals

to be held at the Radisson Hotel,
Schaumburg (Chicago), Illinois U.S.A.

July 30-31, 1999

Conference program

Thursday, July 29

7:00 p.m. - 9:00 p.m. Hospitality Gathering and Discussion Groups


Topics: Fundraising and Support Groups


Becky Hatfield, Parent Support Specialist, University of Utah Hospital, mother of a premature baby
Stephanie Lerner-Ernsteen, President of Evanston Hospital's ISCU Parent to Parent, mother of premature twins



Friday, July 30th

8.30 - 9.00 Registration/Refreshments/Vendor booths open

9.00 - 9.15 Introductions

9.15 -11.15 The importance of strong communication between parents and professionals while in the neonatal unit and after discharge
Professionals reaching out to families, sharing vital information and offering support.


Frank Manginello, M.D.,Neonatologist, author of Your premature baby

11.15 - 12.00 Imagine
Insights on the emotions of professionals as they provide medical care and families as they cope with an overwhelming crisis.


Dianne Maroney, RN, coauthor of Your premature baby and child

12:00 - 1.30 Lunch/Vendor booths open

1.30 - 3.30 Choice of afternoon session:

#1 Helping Professionals Help Parents

Mara Tesler Stein, Psy.D., Clinical Psychologist, coauthor of The emotional journey of parenting your premature baby: a book of hope and healing [in progress]
Michael T. Hynan, Ph.D. Associate Professor, Clinical Psychology, U. of Wisconsin-Milwaukee, author of The pain of premature parents: a psychological guide for coping


#2 Advocacy for children with long-term medical issues.

Sandy Gardner, RN, MS, CNS, PNP, co-editor of Handbook of Neonatal Intensive Care and co-author of The Premature Baby Book (2nd ed.)[in progess]
Allison Martin, MPA. Preemie-child listowner, Advocate for children with special needs

3.30 - 4.00 Afternoon break/Vendor booths open

4:00 - 5:00 Panel discussion
5.00 - 5.30 Author book signing


Saturday, July 31

8.30 - 9.00 Refreshments/Vendor booths open

9.00 - 9.15 Introduction

9.15 - 11.15 Promoting partnership between parents and neonatologists


Guan Koh, M.D., Neonatologist, Kirwan Hospital, Townsville, Australia

11.15 - 12.00 Discussion

12.00 - 1.30 Lunch/Vendor Booths Open

1.30 - 3.30 p.m Choice of afternoon session:

#1 Social Support for Parents of Premature Infants: A Model for Bridging the Communication Gap


Edward A. Martinelli Jr., M.Ed., father of a premature infant
and
Ethical and Humane Decision-Making in the NICU: Parents and Doctors Collaborating in the Gray Zone
Brief outline of the Colorado Collective for Medical Decisions (CCMD) Neonatal Guidelines which were written to encourage discussion between health care providers and parents about ethical and humane decisions in the NICU; then a 30 minute video presentation of the Neonatal Guidelines, produced by CCMD, followed by feedback and discussion.


Deborah L. Davis, Ph.D., Developmental Psychologist, author of Empty cradle, broken heart and Loving and letting go, coauthor of The emotional journey of parenting your premature baby: a book of hope and healing [in progess]


#2 After Discharge: Communicating With a New Set of Professionals


Michael Tsangaris, M.D., Pulmonologist
Sheena Carter, Ph.D, Developmental Psychologist


3.30 - 4.00 Afternoon break/Vendor booths open

4:00 - 5:00 Panel Discussion

5.00 - 5.30 Conclusion Frank Manginello, M.D.

5.30 - 6.00 Vendor booths open
____________________________________________________________________________________________________________________________________________________________________________


Conference fee

$125 for parents, $150 for professionals
Hotel and meals not included in the conference price

Sources of funding assistance for parents to attend conferences
This web site, which also includes information about the city of Chicago, has been put together by Lisa Yarborough

The Alexis Foundation Scholarships

Registration

A registration form is provided - print out and mail to the Alexis Foundation.
Registration closes on July 1st.



Publicity

Media release

Single page announcement for easy distribution



Other issues

Lunches Can be ordered each day for $15, or people can make their own arrangements to suit

Accomodation A block of rooms has been booked at the Radisson Hotel, 1725 East Algonquin, Schaumberg


To book your room, call the Radisson Hotel Schaumburg at (847) 397-1500. Say you need to reserve your room for The Alexis Foundation conference on July 30th and 31st or whatever dates you need. The room rates are $72/night for a single and $82/night for a double room. There is a 10% tax added onto the room rates.
The hotel provides a free shuttle service from O'Hare Airport.
For any questions about hotel accomodation or travel, please email Michelle Martin or phone (248) 543-4169

Childcare
There are no formal arrangements for childcare. Please don't plan to bring children with you to the conference.


Sales and promotion booths


A Fundraising Dinner for The Alexis Foundation
Will be held from 7.00 p.m. on Friday, July 30th at the Radisson Hotel, Schaumberg.
This event is separate from the conference but everyone is welcome. Come along to enjoy an evening of fine dining and entertainment while helping to raise money for a wonderful cause.
Tickets are $50 and dress is formal (black tie optional).

Other social events and get-togethers
On Friday night, there will be a dinner at Mings Chinese restaurant, next door to the Radisson Hotel. We would appreciate if you could book and prepay by July 14th. To arrange this, please email Stephanie Ernsteen.

On Saturday night, Stephy will host a party at her house in Deerfield for Preemie-L members and friends.

Further enquiries
Can be directed to Elaine Sayers or Anne Casey