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June 2015 eNewsletter

JUNE 2015


2015 NNPDF 23rd Annual Family Support and Medical Conference

“The Winds of Hope are on the Horizon… for our NPD Community” is our conference theme and the “Windy City” of Chicago will certainly be an exciting venue for all of our families and attendees.

We are only 7 weeks away from the 23rd Annual National Niemann-Pick Disease Foundation Family Support and Medical Conference to be held in Chicago, Illinois on August 6th to the 9th.   Are you making plans to attend?  If so have you registered?  Have you filled out your “Helping Hand Stipend” form yet?

Important Dates and Deadlines

Thursday, August 6th – Sunday, August 9th, 2015

June 30, 2015 –  Conference Registration deadline
June 30, 2015 –  Helping Hand Stipend Application deadline
June 30, 2015 –  First Time Family Fundraiser deadline
July 15, 2015 or when the block is booked, whatever comes first –  Hotel Reservation deadline

2015 Agenda “At A Glance”

If you are planning on arriving early or staying later than the conference dates, you may be interested in finding activities and outings in and around the Chicago area.  Chris Klauer, NNPDF Family Services and Marketing Coordinator, has put together a Flyer full of Fun Activities and Outings that families can do while in Chicago!  This flyer has some great activities and useful info ~ such as:  distance from the Loews Conference Hotel, activity address, tips about the activity and a link to the website for each one.

You can print off your own FLYER of FUN ACTIVITIES AND OUTINGS TO DO IN CHICAGO, ILLINOIS here!

Chris is looking forward to the opportunity to meet and get to know you all at the 2015 NNPDF Family Support and Medical Conference!


Update ~ A Message from your Foundation Board of Directors! Becky McGuire, NNPDF Development Committee Chair   

 

On Monday, June 8, 2015, Becky McGuire, Development Committee Chair, posted a message to the NNPDF Membership about a new foundation fundraising support document.

Click here to read Becky McGuire’s Letter

This guiding document serves to help set clear expectations and guidelines for NPD fundraising and awareness campaigns.  Our NPD community may look to this instrument for detailed outlines and descriptions of the services that the NNPDF is responsible for.  Simply click here NNPDF Fundraising and Awareness Tiered Services Plan to view this document.    

If you are interested in learning more about how YOU can support the NNPDF in our goals towards “family support services and NPD research”  please feel free to contact Chris Klauer, Family Services & Marketing Coordinator at nnpdf@nnpdf.org for more information. 

If you would like to see other NNPDF Board Updates please click here.


2015 Michael, Marcia & Christa Parseghian Scientific Conference for NPC

The annual “Michael, Marcia & Christa Parseghian Scientific Conference” for Niemann-Pick Type C research was held on June 11-13, 2015 at the University of Notre Dame.  This yearly meeting helps to form collaborations and determine the future direction of NP-C research.  Researchers gathered for three days to discuss the advance in NP-C research.  

When Cindy Parseghian and her husband, Dr. Michael Parseghian started the foundation, which is named for their children’s grandfather, famed Notre Dame Football coach Ara Parseghian, they could find only two labs that were doing any research into the disease. There are now more than 50.
 
“When we started the foundation it was selfish. We wanted to save the lives of our children,” Cindy said. “As we met more and more children suffering we saw that they needed advocates. Just recognizing that, we needed to stay motivated for those children.”

The momentum the foundation generated kept Cindy and Mike going, even after losing their three affected children to the disease. The family’s eldest son, Ara, does not have the disease.  Their son Michael died in March 1997, four days before his 10th birthday. Christa was 10 and a half when she died in October 2001. Marcia lived the longest of the three, and died in 2005 just three months shy of her 17th birthday.
 
“It took years of work, but they began seeing real results. And those tangible results honor the lives of Michael, Christa and Marcia.”, Cindy noted.

Nadine Hill, Executive Director of the NNPDF, was able to attend this conference on behalf of our foundation family membership and learn more about the advances in NPC research, as well as efforts towards NPC clinical trials! For detailed agenda and listing of the NPC research presented please click on Parseghian Conference Agenda 2015


ALERT~ NNPDF Membership Registration Announcement

The National Niemann-Pick Disease Foundation (NNPDF) is the FOREMOST line of communication between our patient membership community and the CRITICAL updates pertaining to clinical trial efforts and news related to same.  Thus, it is ESSENTIAL that the NNPDF Central Office have your most recent and updated contact information.
 
We are asking ALL NNPDF members to complete a NEW NNPDF online membership registration form.  Even if you have done this before ~ with changes of address and frequent e-mail correspondence updates, the NNPDF Staff want to ensure that you are receiving all of our pertinent NPD related communications.  

If you run into trouble, have questions or don’t have online access ~ please email Chris Klauer, Family Services & Marketing Coordinator at nnpdf@nnpdf.org or call her at 877-287-3672.

Once you read the instructions below please go to our Online Membership Form and submit your information today! 

When you click on the link a new page will open.  Please choose your category:

1. Immediate Family Member of someone diagnosed with Niemann-Pick Disease

2. Extended Family Member of someone diagnosed with Niemann-Pick Disease

3. Community Support/Family Friend of someone diagnosed with Niemann-Pick Disease

 
You will NOT be charged for this it is free!  We are simply updating our records.


International Niemann-Pick Disease Alliance (INPDA) ~ New Website

The International Niemann-Pick Disease Alliance (INPDA) recently announced that it is pleased to “introduce” a new website to the GLOBAL NPD community at: www.inpda.org.  The INPDA is a global network of non-profit patient support groups, associated with a group of rare genetic conditions known as Niemann-Pick Disease (NPD).  This special NPD related alliance was formed in 2009 to provide a forum for patient groups and professionals working in the field of NPD to find common ground, develop collaborative efforts and projects in support of a global NPD family community.

The National Niemann-Pick Disease Foundation (NNPDF), along with the Niemann-Pick Disease Group United Kingdom are co-founders of the INPDA.  Today, the NNPDF, as well as the Canadian Chapter of the NNPDF (CCNNPDF) are full members of the INPDA, along with eight other non-profit Niemann-Pick Disease patient advocacy support groups from around the world. 

The INPDA has spent countless hours working towards creating an International Niemann-Pick Disease Registry (INPDR) in support of the Global NPD community, which is now in the final stages of development.  This registry will offer assistance and serve as a guide for researchers so that potential treatments can be developed as fast as possible.  As Niemann Pick Diseases (NPD) is a rare, progressive condition with many unanswered questions there is an urgent need for more information so as to better understand how the disease affects patients and progresses over time. The International Niemann Pick Disease Registry (INPDR) –  is a joint initiative between patient organizations and clinicians world-wide involved in the care of individuals diagnosed with NPD.  Additional news and updates from the INPDA as it pertains to the INPDR will be shared directly with our family membership.  It is essential that that all NPD patients, families and clinicians world-wide be supportive of this initiative and enroll in the INPDR!


Research & Clinical Trial Updates
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GENZYME

Genzyme Initiates Phase 1/2 Clinical Trial to Evaluate Olipudase Alfa in Pediatric Patients

For the complete press release please CLICK HERE.

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VTESSE

Vtesse, Inc. Expands Scientific Advisory Board, Fills Key Patient Advocacy Position to Prepare for Further Clinical Development of VTS-270 in Niemann-Pick Disease Type C (NPC)

To read the complete press release please CLICK HERE.

 


9 8.16

PO Box 49, Fort Atkinson, WI 53538-0049
Phone: 920-563-0930  |  Toll Free: 877-287-3672
nnpdf@nnpdf.org | www.nnpdf.org

JOIN THE NNPDF     DONATE TO THE NNPDF


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