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November 2015 eNewsletter

NOVEMBER 2015

 


Meeting of the International
Niemann-Pick Disease Alliance

The International Niemann-Pick Disease Alliance (INPDA) held its Fourth Biennial Annual meeting in Mainz, Germany ~ October 22nd – 25th, 2015 where representatives from NPD patient support groups representing 13 countries from around the world gathered.  The NPD advocates were joined by pharmaceutical agencies, as well as clinicians and scientists from around the world. The National Niemann-Pick Disease Foundation (NNPDF) is a co-founder of the INPDA and thrilled with the continued growth and advances on behalf of the international NPD patient community.  All in attendance received updates on current clinical trials and therapies, new  country international patient support groups, in addition to setting goals and objectives for the future.  A great note of thanks the to the NPD German and Swiss foundations who co-hosted this meeting.

New goals and objectives for the INPDA were set for the next two years with an emphasis on collaboration of family services and research. The INPDA was established in 2009 to provide a forum for the exchange of information, experience and knowledge for the purpose of accelerating progress in the fight against Niemann-Pick Disease. For more information about the INPDA, visit the Alliance’s Web site at:  inpda.org.


October 2015 GLOBAL
Niemann-Pick Disease Awareness Month

2015 marks the 3rd year during which the NNPDF has supported an International Global initiative to promote October as GLOBAL Niemann-Pick Disease Awareness Month.  For our foundation family membership in the United States and Canada, 2015 marks the 14th and 10th years respectively in which awareness activities throughout the month of October have been promoted across North America! The NNPDF engaged and assisted NPD families from around the world to incorporate creative, imaginative and FUN activities throughout the month to help highlight Niemann-Pick Disease and the journey that our families face!  There were so many GREAT family based events that place…we wanted to share a few with you here:

  • Individualized Family Banners for Facebook Cover Photos for families representing 6 countries
  • Daily “Fast Facts” about NPD ~ highlighted with endearing photos of our NPD patients and adults.
  • Fundraising events and awareness events were held throughout the month.
  • NPD Awareness Day ~ “Thumbs Up for a Cure” ~ October 24th, 2015
    • Taking a photo with “Thumbs Up” to post and share!
    • INPDA created ink thumbprint poster and group photo at the meeting!
    • Pay It Forward Campaign ~ in honor or in memory of a NPD loved one diagnosed with Niemann-Pick Disease
    • Promotion of the foundation color of Persevere Periwinkle (light purple)
      • Painting Pumpkins Purple
      • Purple Porch Light

Thanks to all of the families who took part in this truly GLOBAL awareness campaign effort!  Did you miss jumping on board in 2015??  No worries ~ the NNPDF will be working to build upon, support and promote this event again in 2016.  Why not get a head start and chat it up with your family and friends this holiday season and help us to build up the momentum?

Attendees at the INPDA meeting in Mainz, Germany
highlighted October 24th, 2015 as
INTERNATIONAL NIEMANN-PICK DISEASE AWARENESS DAY
by promoting “Thumbs Up for a Cure!” by sharing their images and thumbprints
to assist with this group collage and the INPDA poster!


November is National Caregivers Month

November is National Caregivers Month and an opportunity for us to remind all of our parents and families as caregivers that it is vital to work rest and respite time into your daily activities as well.  The Caregiver Action Network developed an informative poster with a focus on R-E-S-P-I-T-E, which is the theme for their awareness month.  Respite is not a luxury but rather a chance for you as a caregiver to take time out for yourself to recharge your battery!

With the holiday season just around the corner, the NNPDF wishes to share the “12 Days, 12 Ways” from the Caring for the Caregiver 2014 campaign flyer which also highlights a few easy ways in which you, as a caregiver, or as someone who knows a caregiver, can be supportive in ensuring that all are afforded the time necessary and opportunity to stay strong.


Giving Tuesday ~ December 1st, 2015

As we approach the holiday season, many turn their focus to Giving Thanks, Family and Friends.  Marketing firms work to ensure that you know of Black Friday, Small Business Saturday and Cyber Monday but we would like to remind all about “Giving Tuesday”!  “Giving Tuesday”  is a day that was created by The United Nations and 92Y in 2012.  It is a “National Day of Giving” to kick off the holiday giving season.  Your donations will have a great impact on those diagnosed with and living courageously with NPD every day!

GIVING TUESDAY

The NNPDF will be sending out ways in which EVERYONE can get involved in sharing ways in which YOU can support the work and programs of the foundation ~ in honor and in memory of all our loved ones with Niemann-Pick Disease!  As communication and financial support within the arena of social media continues to grow and flourish we will be placing our focus and efforts of the foundation here.

In the meantime, how can you and your family get involved ~ e-mail the NNPDF at:  bgreen@nnpdf.org to let us know if you would like a personalized Facebook Banner and Icon and don’t forget to include a picture of your loved one.  You will be able to promote the day and tag all your friends so they know to donate to the NNPDF in honor of your loved one with NPD!

Heartfelt thanks for your continued support and involvement!


PersevereWear ~ Getting Ready for the Holidays!

Starting your holiday shopping early?  Looking for a unique and useful gift that will also help to support the programs of the NNPDF ~ AND ~ continue to raise awareness into Niemann-Pick Disease?  Then consider NNPDF “PERESEVEWEAR!”.  New for 2015 ~ bright and energized colors to choose from.  At the 2015, NNPDF Chicago Annual Family Support and Medical Conference, we rolled out the new color choices!  They were a HUGE hit!  Get your orders in early to ensure that we are able to fill your orders in time.  Simply CLICK HERE to place your order for PersevereWear.

Looking for other unique gifts and purchases that will benefit the NNPDF?  CLICK HERE for the NNPDF Store and more NNPDF Awareness gift-giving ideas.

Do you prefer to do all of your holiday shopping from the comfort of your home?  If so, the NNPDF has an easy way for you to shop AND support the foundation at the same time.  The NNPDF are members of “iGive.com” an on-line shopping link which results in a % of your online shopping dollars to be donated to the NNPDF.  “You shop. Your Cause Get Money. For Free.”

NNPDF STORE

As an extra bonus leading up to holiday shopping, if YOU join “iGive” today and get the “iGive” button your enrollment will earn a $5 Bonus for the National Niemann-Pick Disease Foundation.  Every time you shop on-line you help to earn funds that are

  • Over $8,400,000 raised for great causes since 1997
  • Over 1,700 online stores ~ including ALL of your favorites!
  • Shop online as you normally would ~ no added steps.
  • Try the optional “iGive Button” through 2/15/16 to earn a $5 BONUS for the NNPDF!
  • Thank you for supporting the NNPDF!

To register now and get an “iGive Button” for a
$5 BONUS to the NNPDF follow this link:
I-GIVE

Looking for other unique gifts and purchases that will benefit the NNPDF?   Please make sure you stop by the NPD Store for other items that you can purchase to create awareness and provide a great gift for a loved one this holiday season and all year long.

NNPDF STORE


NPD Clinical Trial Recruiting

The NNPDF Central Office is working diligently to ensure that our entire NPD membership community is aware of the various clinical trial opportunities available for those seeking innovative therapeutic options for Niemann-Pick Disease. With this in mind, the foundation is providing an update and links to updates which we have received from the three pharmaceutical companies currently moving forward with clinical trial opportunities for NPD patients.

Below you will find information regarding the various clinical trials which are being developed and/or have begun recruiting patients in the United States and/or United Kingdom for NPD Type C / pediatric patients and NPD Type B / ASMD pediatric and adult patients.  In addition, the NNPDF has maintained an historical archive highlighting the research and background information associated with the development and timelines associated with each of these clinical trials.  You may access that information on the NNPDF website via the “Clinical Trial Archive” link listed under each pharmaceutical company.

* * * * * * * * * * * * * * * * *

NPC

AGE:  6 years to 21 years   |   US:  Yes   |   EUROPE:  Not yet recruiting

PRESS RELEASE DATE:  09/28/2015

PRESS RELEASE     TRIAL INFORMATION     CLINICAL TRIAL ARCHIVE

* * * * * * * * * * * * * * * * *

NPC

AGE: 2 years to 18 years   |   US: Not yet recruiting  |   EUROPE:  Yes

PRESS RELEASE DATE:  09/10/2015

PRESS RELEASE     TRIAL INFORMATION     CLINICAL TRIAL ARCHIVE

* * * * * * * * * * * * * * * * *

TYPE B/ASMD

GENZYME TRIAL 1

AGE:  Up to 17 years of age   |   US:  Yes  |   EUROPE:  Yes

PRESS RELEASE DATE:  06/10/2015

PRESS RELEASE     TRIAL INFORMATION     CLINICAL TRIAL ARCHIVE

________________________

TYPE B/ASMD

GENZYME TRIAL 2

AGE:  18 and Older   |   US:  Not Yet Recruiting  |   EUROPE: Not Yet Recruiting

PRESS RELEASE DATE:  N/A   |   PRESS RELEASE:  N/A

TRIAL INFORMATION     CLINICAL TRIAL ARCHIVE

* * * * * * * * * * * * * * * * *

The National Niemann-Pick Disease Foundation (NNPDF) does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. This site is an educational service of the National Niemann-Pick Disease Foundation and is not meant to provide diagnostic or treatment advice. Information contained or suggested on this Web site does not constitute medical advice. For all information related to care, medication or treatment, the NNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet.”


Reminder from Chris Klauer,
Family Services and Marketing Coordinator

Interested in staying connected with news and efforts tied to the work of the NNPDF?  Then be certain to “Like” us on FaceBook!

NNPDF AWARENESS     NNPDF STAFF

If you have not updated your membership form yet this year please make sure to do so! The NNPDF is updating all membership information and we want to be sure we do not miss you!  Just click the link below and you can do it all online and for free!

NNPDF MEMBERSHIP


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