Friday, October 30, 2015

Tuesday, October 27, 2015

Sunday, October 25, 2015

Friday, October 23, 2015

October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month Day 23 ~ Fast Facts

23

To see our colored in map go to: http://www.nnpdf.org/GlobalOctoberNiemann-PickDiseaseAwarenessMonth2015.htm. Next year can you help fill it even more?

Vtesse, Inc. Expands Scientific Advisory Board and Appoints new VP of Clinical Operations to Support Late-Stage Clinical Study of Lead Drug Candidate VTS-270

Vtesse



The NNPDF Central Office is pleased to share with our NPC Community a Press Release from Vtesse regarding a new addition of Elizabeth Berry-Kravis, M.D., Ph.D. to the Scientific Advisory Board for Vtesse and Michael Massaro as the new Vice President of Clinical Operations. 

These new additions to Vtesse will enhance the team that is working to advance the clinical study of VTS-270 for Niemann-Pick Disease Type C. 


Anna Beck-Policoff (NPC) 02/08/1995 ~ 06/04/2015

Anna

Dear NNPDF Families and Friends,

It is with heavy hearts and great sadness that we notify our NPD family membership of the passing of Anna Beck-Policoff (February 8, 1995 ~ June 4, 2015), who courageously fought the Niemann-Pick Disease Type C (NPC) battle for 20 years.

To Anna’s loving father, Stephen, and her cherished younger sister, Jane, please know that your NNPDF family is here for you and are holding you all in our hearts and thoughts. We are truly heartbroken for you all but are comforted in knowing that the love and support you receive from those who loved Anna most will provide you the fortitude and strength that you will require in the coming days, weeks and months ahead without your precious Anna at your sides. Please reach out to us if you need us ~ we will be here for you.

Thursday, October 22, 2015

Niemann-Pick Type B (ASMD) Patient Community ~ "Qualitative Research Phase" sponsored by Genzyme.

cap



Dear NPB Families,

At the 23rd Annual NNPDF Family Support and Medical Conference held in Chicago, Illinois, some individuals of the NPB community were able to take part in the Patient Reported Outcome. Please follow the link below to read what participants in this Patient Reported Outcome had to say. They are currently looking for caregivers of our pediatric NPB community to take part in this interview.  


Thank you for your help!

Day 22 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

22

Wednesday, October 21, 2015

NNPDF October 2015 e-Newsletter

Banner

Dear NNPDF Families and Friends,

The NNPDF October 2015 e-Newsletter is available! Highlights include:

- Global October Awareness Month
- NNPDF 2015 Family Conference ~ Update 
- Clinical Trials: Updates & Recruitment
- NNPDF Fellowship Progress Reports 


Day 21 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

21

To learn more about the members of the INPDA go to: http://inpda.org/about-us/#content-area-2

Tuesday, October 20, 2015

Sunday, October 18, 2015

Friday, October 16, 2015

2015 GLOBAL Niemann-Pick Disease Awareness Month ~ Awareness e-Blast Dateline: 10/16/2015




Global Niemann-Pick Disease Awareness Month has started and you are all doing a great job of raising awareness. The NNPDF Central Office wanted to be sure that there are ways for everyone to take part in this event, so we put together an e-Blast full of fun and easy ideas. 

For more information on things you can do to help raise awareness this October, click here.

Thursday, October 15, 2015

Day 15 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

CAN

To learn more about The Canadian Chapter of the National Niemann-Pick Disease Foundation please go to http://nnpdf.ca/aboutus_03.html

Wednesday, October 14, 2015

Day 14 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

Spencer

We have gathered information highlighting what participating in a clinical trial can mean for your NPD family member,as well as resources to support your family in making the decision that is right for all involved, please go tohttp://www.nnpdf.org/ClinicalTrialFAQ.html

Tuesday, October 13, 2015

Day 13 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

13

To watch this short film which was funded and supported by Hope for Hollie Foundation, Niemann-Pick UK and the International Niemann-Pick Disease Alliance go to:


Jaymee Emma Hernandez (NPC) 5/7/2011 ~ 10/13/2015

Hernandez Family



Dear NNPDF Families and Friends,

It is with heartbreak and sadness that we notify our NPD family membership of the passing of Jaymee Emma Hernandez (May 7, 2011 ~ October 13, 2015), who courageously fought the Niemann-Pick Disease Type C (NPC) battle for 4 years.

Jaymee just celebrated her 4th birthday with her family and friends.  She had a wonderful Curious George themed birthday party.  She had just attended her first day of Pre-K on September 3rd.   It was an exciting day and a huge milestone for Jaymee and her family.

To Jaymee’s loving parents, Jessica and Pedro, and her beloved older sister, Malory, please know that your NNPDF family is here for you and are holding you all in our hearts and thoughts.  We are truly heartbroken for you all but are comforted in knowing that the love and support you receive from those who loved Jaymee most will provide you the fortitude and strength that you will require in the coming days, weeks and months ahead without your precious Jaymee at your sides.  Please reach out to us if you need us ~ we will be here for you.

When Memorial Service information and how to send condolences to the family becomes available, we will update the NNPDF website: http://www.nnpdf.org/Newsline2015.html# Jaymee

Monday, October 12, 2015

Day 12 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

12

To learn more about the latest news and updates pertaining to Clinical Trials please go to: http://www.nnpdf.org/#ClinicalTrials 

Sunday, October 11, 2015

Day 11 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

11

To learn more about how the NNPDF serves our foundation family membership, please follow this link with highlights from the NNPDF Family Services and Marketing Coordinator, Chris Klauer: http://www.nnpdf.org/FamilyServiceSupport.html 

Saturday, October 10, 2015

Day 10 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

10

To learn more about PersevereWear and other NPD Promotional Products, please follow this link: http://www.nnpdf.org/store.html

Thursday, October 8, 2015

Wednesday, October 7, 2015

Day 7 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

7 To learn more about Niemann-Pick Disease Type B (NPB / ASMD) please follow this link: http://www.nnpdf.org/npdisease_01.html#ASMD

Tuesday, October 6, 2015

Day 6 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

Gregorio
To learn more about Niemann-Pick Disease Type A (NPA / ASMD) please follow this link:


Bio Report Podcast Featuring Ben Machielse from Vtesse, Inc.

Vtesse

Dear NNPDF Type C Families and Friends,

Last week, Ben Machielse, President and CEO at Vtesse, had an opportunity to sit down with Daniel Levine for a segment featured on the Bio Report Podcast. The Bio Report Podcast focuses on the intersection of biotechnology with business, science, and policy. 

Ben was able to focus on the progress made in their clinical development program associated with the Phase II/III for VTS-270 a modified form of cyclodextrin. We are sharing the link for you to listen to the audio recording of the pod cast below:

Bio Report with Ben Machielse: http://www.nnpdf.org/Vtesse.html#PodOct1

Monday, October 5, 2015

Day 5 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

To learn more about the inheritance factor associated with NPD and how genetics plays a part please go to the NNPDF web links below:


ZoeTrina
Mason



Sunday, October 4, 2015

Day 4 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month


For more information on NNPDF current fundraisers and NPD Awareness events, visit:http://www.nnpdf.org/donorinfo_13.html

Saturday, October 3, 2015

Friday, October 2, 2015

Thursday, October 1, 2015

Day 1 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

Day1

For information and additional tools on how YOU can help raise awareness for Niemann-Pick Disease Month, visit the 2015 October GLOBAL Niemann-Pick Disease Awareness Month Page:http://www.nnpdf.org/GlobalOctoberNiemann-PickDiseaseAwarenessMonth2015.htm