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Families Helping Families

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The NNPDF Families Helping Families support program offers assistance to NPD families who wish to donate supplies and gently used equipment to other NPD families in need. Our goal is to ensure that all NPD families have access to the equipment or supplies that they may need to assist their loved ones affected by Niemann-Pick Disease. This page also offers resources for adaptive equipment, appliances and more.


Equipment and Supply Exchange

Do you have equipment or supplies to share or may be in need of? As NPD patient and family needs change, equipment or supplies may become available that could be used by another family. The NNPDF assists families who wish to donate their equipment or supplies to help others in need. The foundation will post descriptions of equipment and supplies available and facilitate any equipment requests.


How the program works:

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

Due to the cost of shipping, participation in this 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 or supply needs.

For equipment/supplies to be donated, fill out the Donation/Request 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 so we can post it on our website. Also, please include condition information on 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/supply needs should complete the Donation/Request Form and fax or email it to the NNPDF office. Please be as specific as possible when describing needs.

The NNPDF will facilitate communication among families donating and families needing items 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 920-563-0930 or send an e-mail to nnpdf@nnpdf.org if you have questions about the program or need assistance with donations and/or requests. Completed forms may be faxed to the NNPDF Office at: 920-563-0931.

EQUIPMENT DONATION/REQUEST FORM


Resources for Adaptive Equipment

Visit the Pinterest Board on the Laffoon family’s blog for lots of great ideas and products to help keep kids with reduced mobility, low muscle tone, or other special needs comfy and stimulated.

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

Accessible Vans

Airway Clearance Vests

Incontinence Supplies

Lifts

Medical Backpack

  • Mighty Pack  Medical backpack designed for patients, by patients. If you’ve been trying to jam your medical supplies and personal belongings altogether, the Mighty Pack holds your medical supplies and personal belongings altogether in a discreet and stylish way. This backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility.

Ramps

Standing equipment

  • EasyStand  This might be an item for schools or PT/OT who would like to purchase for the neuromuscular client.
  • Stand Aid  This product might be considered for the person who still has some mobility for a toilet session all the way up to passive standing which helps in circulation.
  • Redman Power Chair  This is a wonderful chair that goes into many different positions from upright/standing to full recline without the need for other chairs that do some but not all.
  • SpinLife  Standing aids.
  • AbleData  Site is good source of information about equipment for all needs.

01/23/2019 jjb