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May 2018 Newsletter

Dear NNPDF Family and Friends,

LISA’S LETTER

Blessings to you and your families,

Lisa Chavez
NNPDF Board Chair

The NNPDF 26th Annual Family Conference will be taking place on August 2-5, 2018 in Louisville, Kentucky. Visit the NNPDF family conference web page at nnpdf.org/2018fc for conference information including the registration packet, conference registration, and hotel reservation information to assist in your trip planning.

Be sure to register and remit your conference fees by June 14th, for the best rate. Please note that the block of hotel rooms at the special conference rate will be held only until July 18th or until the block is filled, whichever occurs first. As always, please don’t hesitate to contact the NNPDF Central Office if you have any questions or concerns regarding the Family Conference. We are here to help. Call 920-563-0930 or toll-free 877-287-3672; or email nnpdf@nnpdf.org

The NNPDF Equipment Exchange Program assists families who wish to donate pre-owned equipment to others who may be in need. The foundation facilitates any equipment requests and donations.

We currently have several items looking for a new home. Click the Special Equipment button to check out the items available. If you have any questions or an interest in any of these items, please contact the NNPDF at nnpdf@nnpdf.org.

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New Equipment Available:

Invacare Offset Trapeze Bar for G-Series Bed

Invacare Fixed Offset Trapeze Bar is designed specifically for Invacare G-Series Beds. The Trapeze attaches directly to the bed’s headboard. An important patient room accessory designed to help patients change positions while in bed, and aid in the transfer from bed to chairs with minimum attendant assistance. Click here for additional Trapeze Bar information.

For a current list of all available items, please click the SPECIAL EQUIPMENT button above.

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Equipment Successfully Re-Gifted:

Thank you to the families who have recently donated These items. We are happy to share that these items have been successfully re-gifted to very grateful NPD families!

     

Contributions through fundraising by NNPDF members, families and friends are used to provide services and information to individuals and families affected by NPD, as well as supporting research into finding treatments. Please continue to host and support NPD fundraisers.

Awareness Events promote awareness to the general public about Niemann-Pick Disease.

Click the Fundraising button to view current and past NPD events.

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Facebook Fundraisers

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THANK YOU to anyone who has hosted a Facebook Fundraiser in the past few months! If you are hosting a Facebook Fundraiser, please email the NNPDF Central Office at nnpdf@nnpdf.org to let us know. When your fundraiser is complete, please email a snapshot of your final total. All donations from Facebook Fundraisers come in as anonymous.

The EveryLife Foundation for Rare Diseases is pleased to announce the 10th Annual Rare Artist Contest. This contest, which celebrates the unique talents of the rare disease community, is open to rare disease patients, family members, friends, caregivers and medical professionals. The contest will be accepting entries through October 19th, 2018. Visit rareartist.org/2018-art-contest/ for complete contest information.

SHOW YOUR SUPPORT! Visitors can vote for their favorite artwork via the Facebook Gallery once every ten days through October 26th. Two awards will be given in each of 4 categories: one to the entry receiving the most votes on Facebook, and the other selected by a panel of rare disease community leaders. Please let us know at nnpdf@nnpdf.org if you submit an entry. We’d love to show our support!

Click Here for Complete Contest Information

Award recipients will have their artwork on display during the Rare Artist Reception in Washington DC on February 27th, 2019 held in conjunction with RDLA’s Rare Disease Week on Capitol Hill. Artists residing in the United States whose work is chosen for this reception will be eligible for travel stipends to provide the opportunity to see their artwork displayed on Capitol Hill. If you have questions about the contest please email the Contest Curator, Grant Kerber, at gkerber@everylifefoundation.org.

The NNPDF posts new information regarding clinical trial updates as soon as it is received.

Please review our Clinical Trial Update procedure for alerting you to these updates as they are made:

1.  The office posts information received about trials and expanded access therapies from companies on the NNPDF website under the appropriate pharmaceutical company.
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2.  When information is received, it is posted to the website and a summary post is made on the NNPDF Facebook Page and/or NNPDF Awareness Group, with a link back to our website where you can find more detailed information.
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3.  All updates from pharmaceutical companies are included in the next monthly e-newsletter with links back to the original posting on the website.

To review past information already posted, just follow this link: nnpdf.org/research.


FDA Authorizes CTD to Proceed with Extension Protocol to US Phase I Trappsol® Cyclo™ Trial for NPC

 

A quick reminder that if you are not receiving our NNPDF monthly newsletter via email or have recently changed your address or email, please click the button below to join us or to update your information.

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For the most current NPD information sign up to receive our blog update notice via email. This is a free service provided to our NPD community and signing up is easy! Just click the button below.

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DISCLAIMER: 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.
This newsletter is a service of the National Niemann-Pick Disease Foundation’s Family Services Program, made possible by the financial support of our member families and other generous donors and grantors. The NNPDF receives no government funding, nor does it host or receive funding from advertising or from the display of commercial content.
The National Niemann-Pick Disease Foundation is a 501(c)(3) organization. Your donations are fully tax-deductible.