July 16th, 2015 ~ From the Desk of Chris Klauer, NNPDF Family Services & Marketing Director

In support of all in our NPD patient & family membership community, I will be posting weekly informational updates and NNPDF related resource opportunities.  These posts will cover a broad range of topics and I welcome you to share any resources which you have identified and/or contact me if you need specific assistance with an issue.

I know things are busy for so many as summer is half over and families across the country are all trying to fit in as much fun as possible before fall begins to creep in!  So just a few tidbits of information for you to look over when you have time!

• Chicago, Illinois ~ Family Conference Reminders!

• Traveling with Oxygen

• NNPDF Family Conference Special Event ~ August 6th – 9th, 2015

Please feel free to contact me at: nnpdf@nnpdf.org or give me a jingle at: 1-877-287-3672 if you have any questions pertaining to the work of the foundation.  If you find a great resource, please pass it along so I can share it with the rest of our NNPDF Family Membership!

Have a great weekend!

Chris Klauer

NNPDF Family Support and Marketing Coordinator

To read the full post, visit the Family Services and Support page on the NNPDF web site: http://www.nnpdf.org/FamilyServiceSupport.html#Jul172015

Weekend Update ~ NNPDF Fundraising Events!

A quick reminder to our family membership that the following family hosted Fundraising and NPD Awareness Events to benefit the NNPDF are taking place this weekend:

Saturday, July 18, 2015:

• 6th Annual Ryde 4 Tyler  

• Dubuque, Iowa

• Family Hosts:  Jennifer White-Richardson and Family

• In memory of: Tyler White-Richardson (NPC)

• For more information:  https://www.facebook.com/Ryde4Tylor?fref=ts

Sunday, July 19th, 2015!  

• 10th Annual Boxie Baysox Baseball Day 

• Bowie, Maryland

• Family Hosts:  Maris, Darrile and Mark Papier

• In honor of:  Dillon Papier (NPC ~ age 13)

• http://www.dillonsfight.org/documents/BaysoxFlyer2015draft.pdf

Any support from families near and far is so greatly appreciated!

As always you can find all of the NNPDF Current Fundraising and NPD Awareness Events at http://www.nnpdf.org/donorinfo_13.html#Current .

If you would like to add your event to the NNPDF Events page please contact Chris Klauer, Family Services & Marketing Coordinator at: nnpdf@nnpdf.org!

NNPDF Fundraising and Awareness Updates ~ July 13th, 2015

Here at the NNPDF we appreciate all of those that are working together raising funds to help support our programs and promote research to find a cure for all of those affected by NPD.

Updates this week highlight the following topics:

-NNPDF “Recipes for Success” ~ Children’s Carnival

-NNPDF Promotional Products ~Pandora-esque Beads

-NNPDF Awareness Posters 

-NNPDF Fundraiser Information

To read more on ways in which the NNPDF is able to assist you with your NPD fundraising and awareness events and campaigns ~ follow this link: http://www.nnpdf.org/donorinfo_13.html#Jul132015

We WILL Persevere in our Quest for a Cure!

July 10th, 2015 ~ From the Desk of Chris Klauer, NNPDF Family Services & Marketing Director

In support of all in our NPD patient & family membership community, I will be posting weekly informational updates and NNPDF related resource opportunities.  These posts will cover a broad range of topics and I welcome you to share any resources which you have identified and/or contact me if you need specific assistance with an issue.

This week I would like to bring to your attention a couple of things that you may not be aware.  There is a short film that was created, produced and directed by a talented young film maker by the name of Carl Mason.   Carl was able to create magic with a ten minute film and highlight the struggles faced by Millie (NPC) and her family.  The inspiration behind Carl’s work is Hollie Carter who was diagnosed with NPC at the age of 2.  IMAGINE is meant to encourage awareness for NPC.  The film was sponsored and funded by the Hope for Hollie Foundation, Niemann Pick UK and the International Niemann Pick Disease Alliance.  

Friendly Reminders and Updates!

•  Don’t forget about the Vtesse NPC Community Town Hall Webinar slated for Tuesday, July 14th!  
•  There is also a reminder about the Family Conference deadline for reserving your room at the hotel by  Wednesday, July 15th! 
•  Haven’t registered yet for the conference?  No worries ~  contact me at the Central Office for  assistance!
•  I ran across an article that all parents of children with special needs should read and commit to memory!  I wish I had read this so long ago when my son was diagnosed.  

Please feel free to contact me at: nnpdf@nnpdf.org or give me a jingle at: 1-877-287-3672 if you have any questions pertaining to the work of the foundation.  If you find a great resource, please pass it along so I can share it with the rest of our NNPDF Family Membership!

Have a great weekend!

Chris Klauer

NNPDF Family Support and Marketing Coordinator

Visit the Family Services and Support page for the full update:http://www.nnpdf.org/FamilyServiceSupport.html#FamServUpdate

Vtesse Town Hall Webinar ~ Tuesday, July 14th, 2015 ~ Mark Your Calendars!

Hello NNPDF Families and Friends,

We are delighted to be able to share with you an opportunity to attend a town hall webinar hosted by Vtesse's leadership and clinical team. As mentioned in the initial announcement, Vtesse is committed to keeping the community fully informed and soliciting feedback as we move toward the clinical trial process. 

Two webinars will be held on July 14, 2015. As a participant, you will be able to ask any questions you may have and gain an understanding of: 

• Recent developments at FDA and EMA 

• Phase 1 data review 

• Final Protocol including the inclusion and exclusion criteria 

• Introduction of the Clinical Trial Website 

• Update on the Fight NPC Patient Map 

Please follow these links to the Vtesse “GoToMeeting” site to register for the calls:

Register for July 14th, 1:30pm EDT (UK - 6:30pm (BST):

https://attendee.gotowebinar.com/register/7192330336175692801

Register for July 14th, 7:30pm EDT (UK 12:30am, July 15th, BST): https://attendee.gotowebinar.com/register/7756655778643496705

For those who aren’t able to join the call ~ please be advised that Vtesse WILL be recording the sessions and making them available at a later date.

Vtesse is also welcoming any questions you may have prior to the webinar. You may send any correspondence to Carrie Burke at carrie@vtessepharma.com. 

Kind regards,

Nadine Hill

NNPDF Executive Director

Reminder ~ This Weekend's NNPDF Fundraising and Awareness Events

Just a reminder that the following NNPDF Fundraising and NPD Awareness Events are happening on Saturday, July 11, 2015!  If you can support them it would be greatly appreciated!

~ Johnathan’s Dreams Fundraiser ~ 6th Annual Fight to Cure NPC

www.JohnathanSpencer.org

~ Family Fun Day in Support of Hayley Koujaian

http://rush.convio.net/site/TR/Events/General?pxfid=1500&fr_id=1050&pg=fund

~ 2nd Annual Living Like a Warrior Gala ~ Wylder Nation

http://wyldernation.org/2nd-annual-living-like-a-warrior-gala/

As always you can find all of the NNPDF Current Fundraising and NPD Awareness Events at http://www.nnpdf.org/donorinfo_13.html#Current 

If you would like to add your event to the NNPDF Events Page please contact Chris Klauer, Family Services & Marketing Coordinator at nnpdf@nnpdf.org!

NNPDF Fundraising and Awareness Updates ~ July 6th, 2015

Here at the NNPDF we appreciate all of those that are working together raising funds to help support our programs and promote research to find a cure for all of those affected by NPD.

Updates this week highlight the following topics:

-NNPDF Promotional Products ~ Bravelets

-NNPDF “Recipes for Success” ~ Home Party Fundraisers

-NNPDF Awareness Posters 

To read more on ways in which the NNPDF is able to assist you with your NPD fundraising and awareness events and campaigns ~ follow this link: http://www.nnpdf.org/donorinfo_13.html#Jul6th2015

We WILL Persevere in our Quest for a Cure!