You can see more information about last year's conference at: http://www.nnpdf.org/FCRecaps.html.
Friday, October 30, 2015
Thursday, October 29, 2015
Wednesday, October 28, 2015
You can visit the two Facebook group pages here:
Tuesday, October 27, 2015
To learn more about the NNPDF Equipment Exchange Program go to: http://www.nnpdf.org/familyservices_09.html
Monday, October 26, 2015
Sunday, October 25, 2015
Saturday, October 24, 2015
Friday, October 23, 2015
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
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.
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
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.
Click here to view the full post: http://www.nnpdf.org/npresearch_11.html#Genzyme10222015
Thank you for your help!
To see some great ideas to go: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1332807
Wednesday, October 21, 2015
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
Click here to view the NNPDF October 2015 e-Newsletter: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1333525
To learn more about the members of the INPDA go to: http://inpda.org/about-us/#content-area-2
Tuesday, October 20, 2015
Monday, October 19, 2015
Sunday, October 18, 2015
To see the current and all past E-newsletters please go to http://www.nnpdf.org/familyservices_04.html.
Saturday, October 17, 2015
To become a member please go to: https://nnpdf.givezooks.com/events/national-niemann-pick-disease-foundation-membership-for
Friday, October 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
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
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
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:
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
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
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
To learn more about PersevereWear and other NPD Promotional Products, please follow this link: http://www.nnpdf.org/store.html
Thursday, October 8, 2015
You can learn more about Niemann-Pick Disease Type C by following this link : http://www.nnpdf.org/npdisease_01.html#NPC
Wednesday, October 7, 2015
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
To learn more about Niemann-Pick Disease Type A (NPA / ASMD) please follow this link:
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
To learn more about the inheritance factor associated with NPD and how genetics plays a part please go to the NNPDF web links below:
Niemann-Pick Type A http://www.nnpdf.org/npdisease_11.html
Niemann-Pick Type B http://www.nnpdf.org/npdisease_12.html
Niemann-Pick Type C http://www.nnpdf.org/npdisease_13.html
Sunday, October 4, 2015
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
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