INFORMATION ON SUPPORT NETWORKS:

The Donna M. Crandall Memorial Foundation (USA)

Donna Crandall had CF and passed away 2 years ago at the age of 41. As a formal tribute, her family set up this foundation in her name.

The long-term goals of the foundation are to help families with the financial burdens associated with caring for a family member with CF and to positively impact the lives of CF patients.

The foundation's activities include delivering 'goodie bags' to people with CF (PWCF) when they are admitted into hospital. The goodie bags are personalised for the PWCF, being tailored to age and gender, etc. Included inside are usually items like the latest books and CD's, not to mention the occasional gameboy or personal CD player. Also practical items may be included like vouchers for visitor parking or the cafeteria, and also for in-patient leisure facilities such as the TV and phone. Hand-made cookies and candies are also a feature, particularly around the holidays.

The contents of goodie bags all reflect Donna's interests: she loved to listen to music and was a great fan of candy.

The foundation also plans to fund projects that can improve in-patients' quality of life such as hospital improvements for patients (i.e. gym equipment, computer access, etc).

Other assistance has taken place with issues of travel and lodging costs for patients and families if they need help to attend a certain hospital. In the future they hope to set up a college scholarship fund. The list goes on.

It is important to also point out that the Donna M Crandall Memorial Foundation makes a $100 donation to the national CF Foundation each time they learn of a local patient who has died.

The foundation's work is all carried out by the family itself, from baking and delivery to fundraising. As it is run by this voluntary family board, there are no administration costs. The Crandall family is also eager for input on other areas where they may be of help to members of the CF community.

If you would like more details about how you might help, or benefit from the foundation, please contact:

Donna M. Crandall Memorial Foundation
50 Traditional Lane
LOUDONVILLE
NY 12211
USA
Email: rcheney@nycap.rr.com
Phone: (518) 453 6369

The Starbright Foundation (USA)

Founded by movie producer Steven Spielberg and General H. Norman Schwarzkopf , the Starbright Foundation has been set up to help children with serious illnesses (including CF) to communicate with each other and learn about their own condition.

The website: www.starbright.org contains information on how to purchase CD-Roms such as "Cystic Fibrosis: Fitting CF into Your Life Every Day" and videos on topics such as preparing for re-entry into school, 'cracking' hospital life, and communicating with your doctor.

The videos and CD-Roms are free to children and teenagers (and their families) in the USA and Canada. A donation of $25 per item or $60 per set (plus postage and packing) is requested for orders from elsewhere in the world.

The Starbright Foundation also has a network connecting patients from 95 children's hospitals in North America, which also offers access to youngsters being treated from home. Children and teenagers with CF can apply to be part of this community. Membership is again FREE.

Once a member, the network can be accessed from any PC with AOL. Then once on board there are facilities for chat, email, bulletin boards, making friends, learning about different medical conditions (including their own), websites and games.

www.starbright.org

Editor's Note: If you know of any organisation that you think would be of help or interest to our readers, then let us know: www.editor@cfww.org

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