October Awareness Month ~ Day 31~ INPDA!

 

~October 31st, 2013~
The International Niemann-Pick Disease Alliance

Dear Families and Friends,

On the 31st day of our October NPD Awareness month events, we are highlighting the work of the International Niemann-Pick Disease Alliance (INPDA) based out of the United Kingdom.

As we wrap up October Niemann-Pick Disease Awareness Month, we would like to take the time to remind our community that Niemann-Pick Disease is a global disease, that affects people of all nationalities and in all countries around the globe.  

While the NNPDF and CCNNPDF work diligently to extend support to any and all families that reach out and contact us, there are times where distance and language do become a barrier in supporting NPD family needs.  For this, we are very grateful to have the International Niemann-Pick Disease Alliance, which helps us to bridge such gaps. The INPDA states that the group is an, "International response to a group of diseases that present challenges that cross all national boundries." 



INPDA Members during the 2013 Family Support and Medical Conference 

The International Niemann-Pick Disease Alliance was formed in October, 2009 with a view of providing a forum, where, through the exchange of information, experience and knowledge, progress could be accelerated. 

In 2013 a grant was granted to the INPDA in support of creating the FIRST Niemann-Pick Disease International Registry database, which will help provide with accurate numbers of those affected with NPD around the world, as well as allowing us to support a wider spectrum of families.

To learn more about the International Niemann-Pick Disease Alliance (INPDA): Click Here

---

Every day in the month of October we will be sharing fundraising ideas and highlight special events to keep the momentum going.  The NNPDF is here to help and support you in these events ~ see all that the NNPDF has available to assist you here.  So keep an eye on this web site and the Facebook Awareness Event page for the latest updates. 

Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the NPD Community.  Contact: bgreen@nnpdf.org .

Well NPD families and friends far and wide, we made it through another ~ "October as Niemann-Pick Disease Awareness Month"! It is exciting to note that during October 2013 we had higher levels of family enthusiasm and involvement from our NPD membership communities than we have ever had in the past.  For this we are so very appreciative and grateful! 

Thanks for being so tolerant of our daily updates and highlights ~ but ~ our goal was to reach out and share additional information about the work and goals of the foundation all in support of YOU ~ our NPD family membership!

Once again, our appreciation runs deep as we continue to Persist in our Quest for a Cure! 

Nadine

[Oct 31st, 2013~nmh]

October Awareness Month ~ Day 30 ~ NPD Clinical Trials - Recent Updates

~October 30th, 2013~

NPD Clinical Trials ~ Recent Updates 

Dear Families and Friends,

On the 30th day of our October NPD Awareness month event highlights, we are turning the spotlight to the recent updates which the NNPDF has received pertaining to the status of the two ongoing clinical trials into treatment options for both NPD Type C and NPD Type B (ASMD). 

A clinical trial study for NPD Type C patients in the use of Cyclodextrin (2-hydroxypropyl-β-cyclodextrin) is being conducted at the National Institutes of Health (NIH) and Genzyme, (a Sanofi Company), is sponsoring a clinicla trail at Mount Sinai School of Medicine for NPB (ASMD).

Visit the Newsline for the full post!

Every day in the month of October we will be sharing fundraising ideas and highlight special events to help families keep the momentum going. The NNPDF is here to help and support you with these events. So keep an eye on the web site and the Facebook Awareness Event page for the latest updates.

Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the entire NPD Community. Contact: bgreen@nnpdf.org .

The countdown is almost OVER ~ ONE day to go!

October Awareness Month ~ Day 29 ~ Meet the SAB - Day 4!

~October 29th, 2013~

Meet the International Scientific Advisory Board

Dear Families and Friends,

On the 29th day of our October NPD Awareness month events, we are continuing to introduce our NNPDF International Scientific Advisory Board and recognizing their hard work on behalf of all families touched by NPD.

All members of our esteemed Scientific Advisory Board and Board Of Directors contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our SAB.

Visit the Newsline to view the full post

Every day in the month of October we will be sharing fundraising ideas and highlight special events to keep the momentum going.  The NNPDF is here to help and support you in these events ~ see all that the NNPDF has available to assist you here.  So keep an eye on the web site and the Facebook Awareness Event page for the latest updates.

Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the NPD Community.  Contact: bgreen@nnpdf.org.

See you tomorrow!

October Awareness Month ~ Day 28 ~ Meet the SAB - Day 3!

~October 28th, 2013~
Meet the International Scientific Advisory Board

Dear Families and Friends, 

On the 28th day of our October NPD Awareness month events, we continuing to introduce our NNPDF International Scientific Advisory Board and recognizing their hard work on behalf of all families touched by NPD.

All members of our esteemed Scientific Advisory Board and Board Of Directors contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our SAB.  

Visit the Newsline to see the full post!

Every day in the month of October we will be sharing fundraising ideas and highlight special events to keep the momentum going.  The NNPDF is here to help and support you in these events ~ see all that the NNPDF has available to assist you here.  So keep an eye on this web site and the Facebook Awareness Event page for the latest updates. 

Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the NPD Community.  Contact: bgreen@nnpdf.org. 

See you tomorrow! 

October Awareness Month ~ Day 27 ~ Meet the SAB - Day 2!

~October 27th, 2013~
Meet the International Scientific Advisory Board

Dear Families and Friends, 

On the 27th day of our October NPD Awareness month events, we continuing to introduce our NNPDF International Scientific Advisory Board and recognizing their hard work on behalf of all families touched by NPD.

All members of our esteemed Scientific Advisory Board and Board Of Directors contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our SAB.  

Visit the Newsline to see the full post!

Every day in the month of October we will be sharing fundraising ideas and highlight special events to keep the momentum going.  The NNPDF is here to help and support you in these events ~ see all that the NNPDF has available to assist you here.  So keep an eye on this web site and the Facebook Awareness Event page for the latest updates. 

Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the NPD Community.  Contact: bgreen@nnpdf.org. 

See you tomorrow! 

October Awareness Month ~ Day 26 ~ Meet the SAB!

~October 26th, 2013~
Meet the International Scientific Advisory Board

Dear Families and Friends, 

On the 26th day of our October NPD Awareness month events, we are introducing our NNPDF International Scientific Advisory Board and recognizing their hard work on behalf of all families touched by NPD.

All members of our esteemed Scientific Advisory Board and Board Of Directors contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our SAB.  

Visit the Newsline to see the full post!

Every day in the month of October we will be sharing fundraising ideas and highlight special events to keep the momentum going.  The NNPDF is here to help and support you in these events ~ see all that the NNPDF has available to assist you here.  So keep an eye on this web site and the Facebook Awareness Event page for the latest updates. 

Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the NPD Community.  Contact: bgreen@nnpdf.org. 

See you tomorrow! 

October Awareness Month ~ Day 25 ~ 940-WFAW Radio Interview

~October 25th, 2013~

October Awareness Events ~ NNPDF 940-WFAW Radio Interview 

Dear Families & Friends,

On the 25th day of our October NPD Awareness month events, we are focusing our daily highlight on an audio link to a local Fort Atkinson, Wisconsin (home of the NNPDF Central Office) radio interview with past NNPDF Board Chair, Barb Vorpahl, and NNPDF Executive Director, Nadine Hill in recognition of October as NPD Awareness month. 

Visit the Newsline for the full post!

Every day in the month of October we will be sharing fundraising ideas and highlight special events to keep the momentum going. The NNPDF is here to help and support you in these events. So keep an eye on this web site and the Facebook Awareness Event page for the latest updates.

Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the NPD Community. Contact: bgreen@nnpdf.org .

See you tomorrow!