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The NNPDF Equipment Exchange Program

Do you have equipment needs, or equipment to share?

Equipment Donation/Request Form

As NPD patient and family needs change during a chronic illness, there may be equipment stored in homes that is no longer needed and could be put to use by another family. The NNPDF will assist families who wish to donate this equipment. Our goal is to ensure that all NPD families have access to equipment that they need to assist their loved ones affected by Niemann-Pick Disease.

The foundation will retain and post on the Web site a log that describes the type of available equipment and information about equipment needs.This program is being funded in large part by the Jami and Lisa Chavez family in memory of their daughter, Breann, who passed away from NPD Type C in June 2006, at the age of 3 years. Their annual "Ducks for Bucks" event generates the funds to assist in offsetting the cost of shipping equipment from home to home.

Breann w Ducks

Here’s how the program works:

The NNPDF will retain and post on its web site a log that describes the type, size, and location of available equipment and information about equipment needs (names and other identifying information will not be posted on the web site). In addition, the central office will provide matching services for donated equipment and families who have a need for it.

Anyone who has equipment to donate to the program, or who has a need for equipment, should complete and submit the Equipment Donation/Request Form.

Due to the cost of shipping, participation in this Equipment Exchange program is limited to residents of North America. Families with a member affected by Niemann-Pick Disease who live outside North America may contact us and we may be able to make referrals to other sources for equipment needs.

For equipment to be donated, fill out the Equipment Donation/Request Form form and fax or email it to the NNPDF office. Be sure to provide model numbers, a Web link to the product (photo and description) if possible, and any relevant measurements or details so that families will know specifically what is available, and for what size of child/adult it is appropriate. Include a digital photograph of the equipment if you can. Also, provide information on the condition of the item – use terms such as “new", “like new", “gently used", “used", “well-used". Please do not offer items that are heavily soiled or are very worn. Be sure to provide full contact information so that an NNPDF staff member can contact you if there is question about, or a request for your item. The item will be posted on this page. Posting time will not be limited. Your contact and other information WILL NOT be posted on the NNPDF web site.

Families who have equipment needs should complete the Equipment Donation/Request Form and fax or email it to the NNPDF office. Please be as specific as possible when describing equipment needs.

The NNPDF will facilitate communication among families donating equipment and families needing equipment when necessary. We are partnering with local and national distribution services to assist with shipping equipment to and from families at little or no cost.

Call the NNPDF Central Office at 1-877-287-3672 or send an e-mail to nnpdf@idcnet.com if you have questions about the program or need assistance with donating and/or requesting equipment.

Completed forms may be faxed to the NNPDF Office at: 920-563-0931.

Equipment Needed -- Computer Setup for Home Use

One of our NNPDF member families is in need of a computer for home use, to be able to access information on the internet and to be able to read the NNPDF listserv messages.  The need is for a computer, keyboard, mouse and monitor, and for ideas on where to get inexpensive internet service.   If you are in the Los Angeles area and have computer equipment to share with this family, please contact the NNPDF office at 920-563-0930, or toll-free at 1-877-287-3672, or by email at nnpdf@nnpdf.org. Thank you!

Equipment Needed -- "Gait Trainer"/Walker

One of our member families is looking for a "gait-trainer" or walker, for their 5' 2", 100-pound daughter.  Ideally, it will be a walker with a seat for taking short rests during walks.  This walker should have arm rests that reach up to 44 inches off the ground.  One example is the Rifton walker with a U-shaped base, which folds to make transporting it easier.

If you have a walker/gait trainer that might be of use to this family, please contact the NNPDF office at 920-563-0930, or toll-free at 1-877-287-3672, or by email at nnpdf@nnpdf.org. Thank you!

[Oct 19, 2009 mem]

Equipment Needed -- Larger Car Bed

One of our NPD type AB families is in need of a car bed to use in place of a child carseat. Their child can no longer sit upright without discomfort, so traveling in a reclined position is the only option. The family currently has one loaner car bed, which works very well, but it is not portable and is not easily moved from car to car, so they need a second car bed to install in their second car.

Most car beds are designed for premature infants and have a weight limit of 7 - 10 lbs.; however, this child is about 17 lbs and 28 inches long, so will not fit in the most common car beds. The loaner car bed the family is currently using is a discontinued model and they have been unable to find a second one.

If you have a larger-type car bed you are willing to donate to help this family, please contact the NNPDF office at 920-563-0930, or toll-free at 1-877-287-3672, or by email at nnpdf@nnpdf.org. Thank you!

[Feb 26, 2009 ~ nmh]

Equipment Offered -- Infant Car Bed

We have available an infant car bed, suitable for use with infants from 5 - 20 lbs, and up to 26 inches long. The Cosco Dream Ride SE is a fully reclining infant "car bed" that is side facing only. The Cosco Dream Ride SE Infant Car Bed is recognized by pediatricians for transporting premature and low birth weight infants. For a detailed description of the Dream Ride SE, visit Dream Ride Infant Car Bed .

If you are in need of an infant car bed, please contact the NNPDF Central Office at nnpdf@nnpdf.org. The equipment exchange program has been established to assist families who have a child diagnosed with Niemann-Pick Disease. Due to costs, shipping is limited to standard ground service, only to locations in North America.

[April 28, 2009 mem]

Equipment Offered -- Modified Wheelchair

This chair is in very good condition and can be adjusted according to the child's needs.Some modifications were made to the back to suit the needs of the previous user's spine.The chair also has a tray and another head rest. The foot rests can be raised to fit a smaller child. The chair can tilt to approximately a 45 degree angle.

Wheelchair front view Wheelchair side view

Please contact the NNPDF Central Office at nnpdf@nnpdf.org if you are interested in this chair. This equipment exchange program has been established to assist families who have a child diagnosed with Niemann-Pick Disease. Due to costs, shipping is limited to standard ground service, only to locations in North America.

[Feb 24, 2009 mem]

Equipment Matched!! Thank you!!

We have matched the donation of a double stroller with a family in need of one. Thank you!

[March 3, 2009 mem]

We were able to match the donation of a car bed with another NPD family. Thank you for your kind donation and support of this program.

[Feb 26, 2009 nmh]

Portable umbrella stroller

We were able to match the donation of this portable umbrella stroller with one of our member families. Thank you for your kind donation and support of this program.

[Feb 26, 2009 nmh]

Resources for Adaptive Appliances

The following is a list of online resources for various adaptive appliances. Appearance on this list does not indicate endorsement by the NNPDF. Many additional such companies are available by searching online using the keywords indicated.

Accessible vans

Airway Clearance Vests

Ramps

Climbing wheelchair

Standing equipment

Lifts

Incontinence Supplies

[Aug 12, 2009 mem]

The National Niemann-Pick Disease Foundation (NNPDF) does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. This site is an educational service of the National Niemann-Pick Disease Foundation and is not meant to provide diagnostic or treatment advice. Information contained or suggested on this Web site does not constitute medical advice. For all information related to care, medication or treatment, the NNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet.