NNPDF Fundraising and Awareness Updates ~ November 23rd, 2015

#GivingHOPETuesday is December 1st, 2015. #GivingTuesday was developed by the philanthropic community to ensure that on the heels of Black Friday, Small Business Saturday and Cyber Monday those who wish to begin the Holiday Season in the “Spirit of Giving” have the opportunity to give the gift of HOPE to the charity of their choice!! Your directed donations to the NNPDF have a direct impact on those diagnosed with and living courageously with NPD every day! The NNPDF has adopted: #GivingHOPETuesday to remind everyone that their donations will provide the Gift of HOPE to our NPD patients, their families and loved ones this holiday season.

How can you help??? We have laid this out for you in THREE easy steps on the NNPDF web site: http://www.nnpdf.org/donorinfo_13.html#Nov232015 Any questions ~ or ~ need some guidance….please feel free to contact Chris Klauer, NNPDF Family Services and Marketing Coordinator at: cklauer@nnpdf.org or call: 1-877-287-3672. I am here to help! Chris

Nov 20th, 2015 ~ From the Desk of Chris Klauer, NNPDF Family Services & Marketing Coordinator

The end of the year is coming up fast! I know your families will be busy with holiday season activities and family gatherings but please remember to take some time for yourself ~ especially as November is National Caregivers Month!

My update this week highlights:

~ #GivingHOPETuesday!

~12 Days, 12 Ways; Caring for the Caregiver

~ 51 & Done!

Visit the Family Services web page on the NNPDF website to view the update: http://www.nnpdf.org/FamilyServiceSupport.html#Nov2015

Please feel free to contact me at: nnpdf@nnpdf.org or give me a call 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

NNPDF November 2015 e-Newsletter

Dear NNPDF Families and Friends,

The NNPDF November 2015 e-Newsletter is available! Highlights include:

- International Meeting of Niemann-Pick Disease Non-Profit Organizations

- October 2015 GLOBAL Niemann-Pick Disease Awareness Month

- November is National Family Caregivers Month

- Giving Tuesday ~ December 1st, 2015

- PersevereWear ~ Getting Ready for the Holidays!

- Clinical Trials: Updates & Recruitment

- Reminder from Chris Klauer

Click here to view the NNPDF November 2015 e-Newsletter: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1339695

Nov 13th, 2015 ~ From the Desk of Chris Klauer, NNPDF Family Services & Marketing Coordinator

From the Desk of Chris Klauer, NNPDF Family Services & Marketing Coordinator

October NPD Awareness Month was a great success! Everyone did their part in raising awareness for Niemann-Pick Disease!

My update this week highlights:

• ~October Awareness ~ Review
• ~National Family Caregivers Month
• ~Giving Tuesday

Visit the Family Services web page on the NNPDF website to view the update: http://www.nnpdf.org/FamilyServiceSupport.html#Nov1315

Please feel free to contact me at: nnpdf@nnpdf.org or give me a call 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

NPD Current Clinical Trial Recruiting Update

Dear National Niemann-Pick Disease Foundation (NNPDF) Family Membership,

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.

To view the e-news Blast with the updated information dated November 11th, 2015, visit: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1338510

NNPDF Fundraising and Awareness Updates ~ November 9th, 2015

Just a reminder that the following NNPDF Fundraising and NPD Awareness Events are happening:

Tonight, Monday, November 9th in Latham, New York is The Wide World of Sports III ~ In Honor of JP Honsinger.

If you can support them it would be greatly appreciated!

KUDOS to Anne O’Connor Smith for participating in her 1st Ironman Triathlon in Florida this weekend! She had to run, swim and bike to reach the finish line! WAY TO GO ANNE!!!

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!

During October Awareness Month the NNPDF Central Office received notification of events happening in various states! If you raised awareness in your state during October please let us know! We will add you to the map!

October Awareness Map: http://www.nnpdf.org/GlobalOctoberNiemann-PickDiseaseAwarenessMonth2015.htm

Please remember that if you are holding an event and need assistance we can help you with so many of the details. 

- On-line event registration page

- NNPDF Liability Insurance Coverage Certificate

There are certain restrictions so please check with the NNPDF Central Office as to how we can assist!

NNPDF Fundraising Services Plan: http://www.nnpdf.org/documents/FundraisingServicesPlan.pdf

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

Day 31 ~ October 2015 ~ GLOBAL ~ Niemann-Pick Disease Awareness Month

To learn more about what a NPD patient and their families face when a loved one is diagnosed with NPD ~ please refer to: http://www.nnpdf.org/npdisease_19.html & http://npatimeline.blogspot.com/

For a quick review of all the posts follow this link: http://www.nnpdf.org/2015OctAwarenessDailyPosts.html

Thanks to everyone who participated in October NPD Awareness Month!