Books, Videos, Etc. From Organizations

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Drug and equipment manufacturers, and cystic fibrosis organizations, produce a large amount of very high quality CF information intended for patients/parents. Unfortunately distribution is less than ideal; the material is typically sent to CF care providers under the assumption that they will pass out the appropriate materials to the appropriate patients (CFRI materials are usually distributed directly to requesters). Of course this seldom happens, thus the materials seldom see the light of day. What follows is a list by producer of materials that have been discovered. You should give your CF care provider a list of any of the materials you’d like to see (this will help to keep these materials in their memories thus perhaps benefiting other patients, and help keep the channels open between the care provider and the material producers so the providers will get new materials as they become available). If your care provider is unable to assist you hit them hard … uh, no, uh, I mean … you may contact the producer directly (note that as a last resort materials preceded by an asterisk may be borrowed from the CYSTIC-L Lending Library but this will cost you postage and you don’t get to keep the materials).

* Video Tapes from the CFF (5/97)

The CFF distributes a number of video tapes (mostly promotional and training for fund-raising); other tapes of more general interest are listed below (as of March, 1996). These tapes are produced by the CFF unless otherwise noted, and tend to emphasize the role of the CFF in funding research.

“Cystic Fibrosis: A Guide for Parents and Children”, about 38 minutes; 1988. Good basic introduction to CF; ask for the accompanying textbook also. Since this was produced prior to the discovery of the CF gene, also ask for the tape listed below. Produced by CFF and McNeil Pharmacies.

“Update: Gene Therapy For Cystic Fibrosis”, about 12 minutes; September 1995. A hopeful overview of gene therapy.

“Cystic Fibrosis … on the Threshold of Hope”, about 30 minutes; no date given. Hopeful overview of research on correcting the basic defect with an emphasis on gene therapy. Produced by Glaxo.

“The Effect of Ibuprofen on CF Lung Disease”, about 9 minutes; March 1995.

“From Molecules To Miracles”, about 56 minutes; September 1995. Coverage of a congressional briefing on the importance of biomedical research, and particularly gene therapy.

“Solving The CFTR Protein Puzzle”, about 14 minutes, October 1996. This video offers an in-depth look at the Foundation-supported research focusing on the CF gene’s protein product, the CFTR protein. It includes laboratory footage as well as interviews with the researchers who are working on protein repair therapy and basic science studies of CFTR. (Not in CYSTIC-L Lending Library)

“On The Move”, about 16 minutes; February 1996 (most recent edition). A video newsmagazine.

“Alex: The Life Of A Child”, about 1 hour 35 minutes; a made for TV movie aired on April 23, 1986 on ABC TV. Based on the book of the same name. Not produced by the CFF.

Video Tapes From CFRI (5/97)

These tapes are available to rent ($5.00 each) and to buy ($10 each) by contacting CFRI (see Organizations above for contact information). Please order tapes by number and name.

* 1995 CFRI/IACFA Conference Video Tapes. Eight VHS tapes of the Summer, 1995 Palo Alto joint conference. List of Tapes:

  • #74- *Welcome and Introduction, Mitch Messer, IACFA *Dr. Richard Moss, LSPCH *The beginning of “The CF Experience”, Panel of six adults with CF, continued on tape #81
  • #75- *Dr. Steven Shak, Genentech, Inc. *CF Research update by Dr. Jeffrey Wine *Pseudomonas Aeruginso Vaccine Studies, Speaker, Dr. Anna Rudeberg
  • #76- *The Scandinavian use of IV Antibiotics, Speaker, Professor Niels Hoiby *Panel Discussion: Moderated by Jim Hampton *Home Care for the CF Patient, Speaker, Craig Kephart, R.R.T.
  • #77- *”Overview of Chest Physiotherapy” Speaker Gale Hoffman, R.R.T., R.C.P. IACFA Meeting Rules
  • *”Overview of Gastrointestinal Function in CF Patients” Speaker, Dr. Dorsey Bass *”Medical Approaches to Lung Transplantation” Speaker, Dr. James Theodore
  • #78- *Effective CF Treatment, panel: Dr. Judy Palmer, LSPCH, Margie Schaaf, Registered Dietitian
  • #79- *”Measuring Lung Function in Young Patients with CF” Speaker Dr. Frank Accurso, Denver Children’s Hospital *CFRI Summer Camp Panel Discussion John Bartelt, Ph.D., Camp Counselor, Alisa Evans, Camp Director, Dr. Margaret DeLano, Camp Physician
  • #80- *Lung Transplantation: Personal Perspectives, Speaker, Holly Tringle, Vice-Chairperson, CF Network IACFA Annual Meeting
  • #81- *The CF Experience, continued from tape #74 *Managing Health Care from Childhood through Adulthood, Speaker, Dr. Stanley Fiel

* 1996 CFRI Conference Video Tapes. Nine VHS tapes of the August, 1996 conference. List of Tapes:

  • #1 – Beth Sufian – Friday Evening – “Insurance”. Run time 1:10
  • #2 – Dr. Wine – Overview. Run time 1:00
  • #3 – List of Sponsors, Intro to CFRI. Run time 0:11 5-member panel – “Fears & Dreams”. Run time 1:49
  • #4 – Beth Sufian – “CF and the Law: Know Your Legal Rights”. Run time 1:26
  • #5 – Dr. Cox – “Liver Disease in CF Patients”. Run time 1:00 Dr. Doring – “Preventing Lung Infections”. Run time 1:00
  • #6 – Dr. Hardy – “CF Clinical Care in the US”. Run time 1:00 Dr. Rossman – “Complementary Approaches to Healing”. Run time 1:00
  • #7 – 8-member panel – “Challenges and Rewards of CF Parents”. Run time 1:31 Delano award; sponsors; volunteers. Run time 0:12
  • #8 – Complementary Healing Workshop – Claire Substitute? – Massage. Run time 0:51 Complementary Healing Workshop – Foster – Yoga. Run time 0:30
  • #9 – Complementary Healing Workshop – Rossman – “Imagery”. Run time 1:36

McNeil Pharmaceutical (5/97)

* CF and Me by Susan Tumiel Smith, Med.; 15 pages (1995) — An introduction to CF care targeted at pre-school/young elementary children. Lots of colorful drawings.

* Big Pats or Little Pats by Susan Tumiel Smith, Med.; 12 pages — An introduction to CF care targeted at toddlers. Lots of colorful photographs.

* This is Paul by Kirsten Webster Griebel; 16 pages (1955) – – An introduction to cystic fibrosis for children age five and older. Lots of line drawings, some activities.

* Living With Cystic Fibrosis; Family Guide to Nutrition, 11 pages (1993) — CF nutritional information, including sample recipes, targeted at adults.

* Positioning for Bronchial (Postural) Drainage (1983) — a 10 inch by 12 inch chart with drawings and descriptions of the various positions.

* Target 100 percent Plus; Energy, Growth and Cystic Fibrosis Nutrition — a video tape (17 minutes) and booklet (ask for both) for adolescents through adults explaining CF nutrition.

* The Adventures of Mr. Enzyme — a video tape (18 minutes) and five comic books (ask for tape and comic books) for children and adolescents (VERY corny but fun) teaching about CF care in a fun context.

Genentech, Inc. (5/97)

* CF Family Education Program Program developed by the CF Family Education Project at Baylor College of Medicine and Texas Children’s Hospital. 1994 edition made possible by an educational grant from Genentech, Inc. These materials were originally developed as part of grant HL38339 from the Division of Lung Diseases, National Heart, Lund and Blood Institute, National Institutes of Health. Additional support was provided by The Institute for Rehabilitation and Research Foundation, Houston, Texas.

Highly recommended by a CYSTIC-L parent. During the training phase of the Cystic Fibrosis Family Education program, booklets addressing CF issues for patients and family were available only through CF Centers which had gone through training. The booklets have now been made available by Genentech to CF Centers regardless of participation in the Baylor program. PWCF wishing to obtain any of these booklets should contact their CF Center. A friend of CYSTIC- L has made the booklets available to us, so that people unable to obtain them from their CF Center may borrow them via the CYSTIC-L lending Library..

The CF Family Education Program addresses CF issues divided into age groups as follows:

  1. Early Childhood Respiratory: My Best Friend Jason The Amazing Body Nutrition: A Day at the Outdoor Market Going to David’s Party and Uncle Jack’s Coming to Dinner Communication: The Big Camp Out The Tree House Coping: A Day of Choices
  2. Middle Childhood Respiratory: Taking Care of My Lungs Nutrition: Eating for Energy Communication: Speaking Out Coping: Making Choices
  3. Adolescence Respiratory: Taking Charge – Caring for your lungs Nutrition: Taking Charge – Eating for energy Communication: Taking Charge – Speaking out Coping: Taking Charge – Solving problems
  4. Parent Respiratory: Managing Lung Problems in Cystic Fibrosis Nutrition: Managing Nutrition and Malabsorption in Cystic Fibrosis Communication: Managing Cystic Fibrosis through Communication Coping: Living and Coping with Cystic Fibrosis
  5. Newly Diagnosed
    For parents of children under three: Beginning CF Care

Scandipharm (5/97)

* Cystic Fibrosis in the Classroom by Amanda Young, 7 pages — An introduction to CF targeted at teachers.

* Jeremy Bishop Explains CF, 6 pages — an activity book (e.g., drawing, puzzles, maze) introducing CF care to elementary children.

Solvey Pharmaceuticals (5/97)

* CF and Your Tomorrow; a Guide to Surviving and Thriving with Cystic Fibrosis by Deirdre Ann Croal; 33 pages (1994) – – coping with CF aimed at adolescents/high school/college.

(5/97)* My Cystic Fibrosis Book (by Anna Mandolfo, a C.F. patient in the United Kingdom). Explains CF to kids; illustrated with fuzzy little green guys kids can relate to. Topics covered are: CF, treatment, physiotherapy, exercise, nutrition, enzymes, clinic check ups, hospital visits, friends, school, and daily activities for good health. The pharmaceutical company that puts it out is Solvay Pharmaceuticals, Inc., Marietta, Georgia 30062. The book will be made available to CF centers and can be obtained through CF caregivers.

American Biosystems, Inc

* The ThAIRapy Vest Video Tape. (5/97)
Promotional tape available from the manufacturer. To have a free copy mailed to you call or write American Biosystems, Inc., 20 Yorkton Court, Saint Paul, MN 55117. Telephone: (800) 426-4224. Run time about 13 minutes.

Nellcor, Puritan, Bennett

* The Flutter Video tape. (5/97)
Promotional tape available from the manufacturer. To have a free copy mailed to you call Nellcor, Puritan, Bennett at 800-826-2069 (ask to speak to Customer Service). Run time about 20 minutes.

Second Wind Transplant Association

Information You Should Know About Lung Transplantation: Before, During and After. Helpful Hints for Lung and Heart/Lung Transplant Patients and their Families (10/97)
by Karen A. Couture; published by Second Wind Transplant Association (contact them at 888-222-2690 or just mail $15 to: Second Wind Transplant Association, 9030 West Lakeview Court, Crystal River, FL 34428. Their e-mail is: [email protected]

The book is extremely thorough. It literally tells you everything you need to know about the tx process. In addition she has compiled a listing in the back of the book of all the transplant centers, the amount of tx they have done during a specific year, the transplant coordinator, in addition to the average waiting time at each center.

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