Day 6 ~ October 2014 as GLOBAL NPD Awareness Month ~ Genzyme's Expression of Hope III

Dearest NNPDF Families and Friends,

In celebration of Day 6 as October 2014 GLOBAL Niemann-Pick Disease Awareness Month ~ we wish to encourage all of those who have a loved one diagnosed with NPD to take part in the Genzyme's (A Sanofi Company)~ program titled: Expression of Hope III (EOH).

Genzyme's EOH III ~ supports all of our NPD Patient Advocacy group like mission's to advance education and raise awareness into NPD in a collaborative effort globally. Won't you consider taking part in 2014? Let your artistic abilities SOAR in honor of your loved one diagnosed with NPD!
Better yet ~ be creative and support the artistic ability of a loved one living with Niemann-Pick Disease and assist them in creating a piece of art for submission!

The NNPDF, along with Genzyme are delighted to announce that the Expression of Hope III (EOH) program is now open for submissions. Expression of Hope is a global program of awareness and inspiration featuring works of art by the Lysosomal Storage Disorder (LSD) community. Artists of all ages and artistic ability -- including patients, caregivers, family members, friends, and healthcare providers -- who have been affected by an LSD can submit an original work of art that reflects their own individual story.

Continue to follow the DAILY 2014 October as GLOBAL Niemann-Pick Disease Awareness Month events at: http://nnpdf.org/NewsLinePage.html

We WILL PERSEVERE in our Quest for a Cure!

2014 Global October Niemann-Pick Disease Awareness Month ~ Day 5 ~ Family and Friends Letter

Dear NNPDF Family and Friends,

For Day 5 of October 2014 as GLOBAL Niemann-Pick Disease Awareness Month, we wish to share an easy, tried-and-true, effective way for our NPD family membership to raise awareness and fundraise in honor or in memory of your loved one with Niemann-Pick Disease. Let the NNPDF staff at the Central Office help you to create a letter to mail out to family, friends, community supporters and local businesses!

If you've always wanted to fundraise, but haven't had the time or resources to hold an event, then creating a “NPD Family and Friends” letter is the way to go! Why? Because the NNPDF central office staff will assist you with the details and provide you with everything you need for a successful NPD Awareness Campaign! 

Visit the Newsline web page to find out how it works: http://www.nnpdf.org/NewsLinePage.html#Oct5

2014 Global October Niemann-Pick Disease Awareness Month ~ State Proclamations!

Dear NNPDF Families and Friends,

To usher in Day 4 of October 2014 as GLOBAL Niemann-Pick Disease Awareness Month, we are asking that our entire Niemann-Pick community reach out to your State Governor’s offices early in October and request that the month of October 2014 be declared as Niemann-Pick Disease Awareness month in your state on behalf of your loved one with NPD.

It’s easy! To find out how to request a proclamation in your state ~ first, try a simple Google Search indicating your state of residence and the words:  Governor’s Proclamation (ie:  State of Wisconsin Governor’s Proclamation). This search should give you a direct link to the guidelines and necessary contacts associated with your state to request a proclamation on-line.   If you have trouble finding the on-line form then call the Governor’s Office or Mayor’s Office and ask who handles requests for proclamations and what information they need. 

Visit the Newsline web page for a quick link to where you can write proclamations online as well as more tools and tips: http://www.nnpdf.org/NewsLinePage.html#Oct4

2014 October Niemann-Pick Disease Awareness Month ~ Day 3 ~ NNPDF & CCNPDF Awarded Genzyme "Patient Advocacy Leadership" (PAL) Award Grant

Dear NNPDF Families and Friends,

With the arrival of “Day 3” as Global Niemann-Pick Disease Awareness Month ~ the National Niemann-Pick Disease Foundation (NNPDF), along with our sister chapter, the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF) are pleased to share with our family membership that the NNPDF & CCNNPDF in a collaborative project have been advised that we are 2014 award recipients of a Genzyme “Patient Advocacy Leadership” (PAL) award grant! 

Nadine Hill, NNPDF Executive Director, wrote a grant to the Genzyme PAL program on behalf of both the Niemann-Pick Disease patient advocacy groups in the United States and Canada in support of a Board of Director’s training program ~ titled: NNPDF & CCNNPDF ~ Bridging the GAP to the Future.

Visit the Newsline webpage for the full press release: http://www.nnpdf.org/NewsLinePage.html#Oct3 

2014 October Niemann-Pick Disease Awareness Month ~ Day 2 ~ 'Indications' Focus on NPD

Dear NPD Families and Friends,

The National Niemann-Pick Disease Foundation is pleased to share with the NPD community the October 2014 issue of the Lysosomal Disease Network (LDN) monthly online newsletter, “INDICATIONS”. The NNPDF is highlighted in the "Meet Our Patient Advocacy Groups" section, which covers the work of the foundation as a it relates to who we are, what we do and just how far we have come since the foundation was established in 1992!

The article was written by Evelyn Redtree, writer & editor of the LDN 'Indications' newsletter. Evelyn nterviewed key NNPDF staff, Board of Director's, researchers and scientists to create a complete history behind the foundation, the research goals you, our community, have helped us reach. Other topics discussed in the article are related to: 

 - Patient Advocacy Support

 - Research and the SAB

 - Current Clinical Trials

 - Meeting the Experts

 - Checking your knowledge on Niemann-Pick Disease 

Visit the newsline for the article as well as the Day 2 post for October Niemann-Pick Disease Awareness month: http://www.nnpdf.org/NewsLinePage.html#Oct2

NNPDF Global October Awareness Month is Here!

Dear NNPDF Families and Friends,

It's here! October Awareness Month begins today and with it comes more opportunities than ever before to help spread Awareness!

To kick off October Awareness month, we are pleased to share with the community that the National Niemann-Pick Disease Foundation is working collaboratively with the Canadian Chapter of National Niemann-Pick Disease Foundation as well as Niemann-Pick United Kingdom advocacy group to introduce our first GLOBAL Niemann-Pick Disease Awareness month! 

In support of the global collaboration between Niemann-Pick Disease patient advocacy groups we have designed a Facebook cover and icon which can be customized by participating country. 

The NNPDF Central Office utilized the three unique logos identifying each participating NPD advocacy foundation (NNPDF Persevere for Life Tree, UK’s Sunrise logo & The CCNNPDF’s Maple leaf) and combined them together to show our unity and inspire all of our NPD families to come together globally. To help you raise awareness this month, we have customized these for our US, Canadian, & UK families.

 
 
  

For more information on how we can create a custom Facebook cover and icon for you, 

visit our social media signature page:

http://www.nnpdf.org/documents/NNPDFE-mailsignaturelineinstructions_000.html#Oct2014

We've also put together an e-newsletter to share fundraising ideas and highlight special events throughout October to keep the momentum going locally as well as on social media. 

View the October Awareness Month e-Newsletter: http://www.graphicmail.com/new/viewnewsletter2.aspx?SID=0&SiteID=4117&NewsletterID=1243893

Planning an October Awareness event? Don't forget we can help you with educational brochures, wristbands and family and friends letters! We'd love to hear about your event!  Feel free to contact the NNPDF central office at: nnpdfoffice@idcnet.com or by phone (920-563-0930)

Keep an eye on the web site and the social media pages for the latest updates throughout October!

NNPDF e-Newsletter ~ September 2014

September 2014 NNPDF e-Newsletter now available! Highlights include:

•  October Awareness Month Preview
•  "Think Again. Think NPC." 
•  NNPDF Equipment Exchange
•  Family Service Resource ~ Family Voices
•  Clinical Trial Updates
•  Recording of Board Membership Conference Call from August 28th
•  Family Conference Recap ~ Photos 

Click below to view the September 2014 e-Newsletter: 

http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1240482