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January 2018 Newsletter

Dear NPD Family and Friends,

We have exciting news to share as we begin this New Year. Together with your help we have successfully met our community goal for Vision of Hope! Since launching our campaign in October the community has rallied together to ensure that NNPDF continues to be a source of strength and support to all families facing this disease. If you have not yet been able to be a part of this community movement, it is not too late to donate to the Vision of Hope.  Our campaign is scheduled to run through Rare Disease Day on February 28, 2018.

Your support and perseverance has laid the groundwork to begin our search for a trained non-profit Executive Director that can restructure and build a sustainable and appropriate support system capable of walking alongside each of our families throughout their journey. You can learn more about our search for an Executive Director at the following link: nnpdf.org/vision-of-hope/nnpdf-executive-director/

Our progress in uniting as a community has not gone unnoticed by our industry partners. They have recognized our collaborative efforts and joined in with support for our new vision and willingness to create a centralized voice.

We look forward to continuing to work together with all of you over this coming year. Your voice is important to us throughout this process. We will continue to update you on our goals as they are established and welcome your feedback. As a reminder, you may reach out to me directly at lchavez@nnpdf.org, should you have any thoughts you would like to share.

Don’t forget to SAVE THE DATE for our 26th Annual Family Conference, August 2-5 in Louisville, Kentucky. This will be a great time to gather together, sharing experiences, memories and future hopes that we may renew our strength to overcome the daily challenges this disease brings. We will be bringing you more information on what to expect at this year’s conference in the upcoming months. 

Together we can make a difference in the lives of those living with NPD today and can change the course of this disease.

Wishing you a blessed New Year!

Lisa Chavez
NNPDF Board Chair

DONATE NOW to the Vision of Hope Campaign through PayPal using your debit or credit card. Using PayPal is easy and having an account is not required. Click the Donate Now button!

Show your rare. Show you care.

Rare diseases such as Niemann-Pick present tremendous challenges to patients and their caregivers. Symptoms differ not only from disease type, but also from patient to patient suffering from the same disease. Additional complications can include a prolonged time in receiving a correct diagnosis, finding support resources, appropriate quality health care, and difficulties in accessing available treatment. This often results in heavy social and financial burdens on patients and their families.

Rare Disease Day® takes place annually on the last day of February. Many events are hosted throughout the month of February and on Rare Disease Day to raise awareness about rare diseases and their impact on patients’ lives.

Anyone can get involved in Rare Disease Day awareness. To learn what’s happening around the world visit rarediseaseday.org. U.S. participants can find helpful resources, activities and events to get involved at rarediseaseday.us. This global event was founded by EURORDIS and is sponsored by the National Organization for Rare Diseases (NORD).

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NNPDF Rare Disease Day Participation

To raise awareness for Niemann-Pick Disease and Rare Disease Day on February 28th, the NNPDF staff will be offering customized Facebook profile pictures.

Please email your request to Jill at jbeirl@nnpdf.org.

In your request be sure to include:

  1. A photo of your NPD loved one
  2. In Honor of or In Memory of
  3. Your loved ones name
  4. Niemann-Pick Disease type

Along with your custom Facebook profile picture, our 2018 World Rare Disease Day Facebook banner will be included for you to display to promote awareness.

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We are pleased to announce the 26th Annual NNPDF Family Conference will be held in Louisville, Kentucky from August 2nd to August 5th. 
Watch for more detailed information in the Spring of 2018.

In the meantime check out all there is to do in Louisville at gotolouisville.com/things-to-do/ and start making your plans.

We look forward to seeing everyone!

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Do you have unused equipment or items that you’d like to donate to another NPD family in need? Families Helping Families is a support program offering NPD families a chance to help other NPD families with items that might make their lives a bit easier. These items can be in the form equipment, clothing, diapers, formula, medical supplies, etc. We welcome any ideas, tips or tricks you have found helpful as well.

The foundation posts descriptions of items and equipment as they become available and facilitates any requests. Click the special equipment button for updates and availability.

The NNPDF was happy to help transfer this stander from a family that no longer was able to use it to one that would be able to put it to good use!

This is what the Families Helping Families program can do! Let us know if you have items that could be sent to other families and make their lives a little easier!

Just contact Chris at nnpdf@nnpdf.org or call 920-563-0930 and we can get the ball rolling!

 

Contributions through fundraising by NNPDF members, families and friends are used to provide services and information to individuals and families affected by NPD, as well as supporting research into finding treatments. Please continue to support NPD fundraisers.

Awareness Events promote awareness to the general public about Niemann-Pick Disease.

Click the Fundraising button to view current and past NPD events.

These are the updates the NNPDF has received since the last newsletter with regards to clinical trials. As a reminder, new information is immediately posted to the website as soon as it is received. Follow this link: nnpdf.org/research/

Please review our Clinical Trial Update procedure for alerting you to these updates as they are made:

  1. The office posts information received about trials and expanded access therapies from companies on the NNPDF website under the appropriate pharmaceutical company.
  2. When information is received, it is posted to the website and a summary post is made on the NNPDF Facebook Page and/or NNPDF Awareness Group, with a link back to our website where you can find more detailed information.

  3. All updates from pharmaceutical companies are included in the next monthly e-newsletter with links back to the original posting on the website.

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AIDNPC Update #18

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CTD Holdings’ European Clinical Trial Adopted by National Institute for Health Research of England
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A quick reminder that if you are not receiving our NNPDF monthly newsletter via email or have recently changed your address or email, please click the button below to join us or to update your information.

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For the most current NPD information sign up to receive our blog update notice via email. This is a free service provided to our NPD community and signing up is easy! Just click the button below.

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

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