FW: From the CFRI

[Guest guest]

Hi,

Sohoo, Program Services Manager from the CFRI, asked me to forward the

invitations to upcoming events and I am happy to oblige. Enjoy!

Peace

Torsten, dad of Fiona 6wcf and Sebastian 4months wocf

e-mail: torstenkrafft@...

Greetings Everyone:

Cystic Fibrosis Research, Inc. (CFRI) will be having their semi-annual

general membership meeting on

Wednesday, October 22, 2003, 7pm - 9pm at Lucile Packard Children's Hospital

Auditorium, 725 Welch Road, Palo Alto, CA.

The Business agenda will include the Executive Directors Report, the

Research Advisory Committee Report, the Financial Report

and election of Board of Directors. You are invited to join us.

Our featured topic, A New Look at Cystic Fibrosis Lung Disease, will be

provide by Jeff Wine, PhD, Director of Human Biology,

Director of CF Research Laboratory, Stanford University, Stanford, CA

If there are any questions, please do not hesitate to call our CFRI office.

Regards,

Soohoo

Program Services Manager

2672 Bayshore Parkway, Suite 520

Mountain View, CA 94043

Tel:

Fax:

Website: www.cfri.org

E-mail: progmgr@...

____________________________________________________________________________

____________________________________________

CFRI is thrilled to announce that we now have VHS, videotapes, of our 2003

Annual Educational Conference. The videotapes can be purchased through our

office at:

CFRI

2672 Bayshore Parkway, Suite 520

Mountain View, CA 94043

CDs and DVDs are not yet available but will be announced when completed.

VHS Topics/Speakers

Time Cost

1. The Relationship Between Psychosocial Issues and Nutritional Status.

Bathon, MSW 44 Minutes

CF: Living It, Researching It And Where We Are Now.

Quinton, Ph.D. 55 Minutes $6.00

2. Antibotic Treatment of Lung Disease in CF.

Saiman, M.D. 56 Minutes

CF and Life adjustments: Coping with Whatever Comes

Rev. Alice Zulli 54 Minutes $6.00

3. Challenges of End Stage And Loss - Panel Discussion

Rev. Alice Zulli, Moderator 57 Minutes

CF In The Classroom

LeNoir, RN & Jeannie Kane, M.A. 60 Minutes

$6.00

4. Exercise As A Form of Airway Clearance.

Randah Whitley, PT 44 Minutes

Inhaled Glutathione As A Potential CF Therapy.

Bishop, M.D. &

Hudson, Ph.D. 62 Minutes $6.00

5. Gene Therapy Research: How Close are We?

Moss, M.D. 56 Minutes $4.00

6. The Endocrine System in Patients with CF: Updates in CF Related Diabetes,

Growth and Development and Osteoporosis.

Judy Kalinyak, M.D. 52 Minutes

$4.00

7. Compliance: Choices And Consquences - Parents/CF Adult Panel Discussion

Hatsuko Arima, LCSW, Moderator 79 Minutes

$4.00

(Please circle your selections) Depending upon anticipated orders, your

patience is appreciated.

Name________________________________________________________________________

_

Address____________________________________

Telephone__________________________

Email______________________________________Number of Tapes ordered

_____________

Credit cards: ___ Mastercard ___Visa ___Discovercard Other

_______________________

Card Account Number_______________________________________ Expiration Date

______

Amount Submitted

$_____________Signature________________________________________

____________________________________________________________________________

________________________________________

Greetings!

We wish to make you aware of two opportunities for you and your doctor to

learn more about glutathione

use in cystic fibrosis Dr. Bishop.

First, Dr. Bishop will make an oral presentation at a workshop held in

connection with the annual North American Cystic Fibrosis Conference to

be held in October in Anaheim, California. Your CF Clinic doctors and

nurses will most likely be in attendance at this conference. This is an

opportunity for you to ask them to attend Dr. Bishop's presentation,

which will be held the afternoon of Thursday, October 16th. Dr. Bishop

will also present at poster sessions on Friday the 17th and Saturday the

18th, and would be delighted to speak with your doctors and nurses then,

as well.

Second, Dr. Bishop and M. Hudson, Ph.D. presented an overview

of his research

and findings at the annual CFRI Educational Conference, held in July in San

Francisco.

In the near future, CFRI will make available both html and video

versions of that presentation. You can check their website,

http://www.cfri.org for updates on when those will be accessible.

Dr. Bishop is always available to answer your questions, and he would

appreciate any feedback you have to offer. Email him at

gshtreatment@...

Sincerely,

The Utah Valley Institute of Cystic Fibrosis

____________________________________________________________________________

____________________________________

You are invited to a self-management parent workshop

Living Well with Cystic Fibrosis

Offered in two sessions - Saturdays October 4 & November 1, 2003

10:00 a.m. - 3:00 p.m.

Free of Charge

Workshop will be held in the 3rd Floor East Conference room

Lucile Salter Packard Children's Hospital

Instructors: Isabel Stenzel Byrnes, MSW, MPH and an adult with cystic

fibrosis

Ann , MA, CF Parent Mentor and mother of an adult

with CF

Workshop topics include:

· Managing your child's medical care

· Maintaining a normal family life

· Providing healthy eating and exercise

· Teaching social skills

· Developing communication skills

· Managing emotional consequences and marital issues

· Managing sibling issues

· Dealing with depression

· Handling school issues

· Maintaining adherence to your child's treatment plan

· Working with the healthcare team

· Making informed treatment decisions

· Planning for the future

· Normalizing the CF experience

Sponsored by the Family Centered Care Program and the Cystic Fibrosis Center

at LPCH

Co-sponsored by the CF Parent Advisory Committee

Lucile Salter Packard Children's Hospital

725 Welch Road, Palo Alto, CA 94304

R.S.V.P. to Joanne Asano at by September 22, 2003