Day 8 ~ Tomorrow is #GivingHopeTuesday ~ Pass It On!

Today is Cyber Monday when many will be shopping on-line for all the great holiday deals! Before your friends and family get wrapped up in the online mania, please take a moment to remind them about the role that the NNPDF plays in your lives and how their donations to the foundation will be matched on Tuesday, December 1st, 2015! 

We've put together an e-News blast for you to share with friends and family showing some special opportunities available to you for #GivingHopeTuesday, which includes ways you can shop for the holidays and donate at the same time!

• Matching funds from Network for Good for every donation made on December 1st at www.nnpdf.org
• Bravelets donating double ($20 instead of $10) for all jewelry purchased on December 1st.
• Holiday shopping options that donate back to the NNPDF a percentage of your purchase.

Click here to view the e-Blast: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1343158

Day 7 ~ NNPDF #GivingHOPETuesday - How can you take part?

Getting involved and promoting #GivingHOPETuesday is easy! Here are a few simple ideas:

- Consider making a gift on #GivingHOPETuesday at: https://donatenow.networkforgood.org/nnpdf?code=Homepage

- Help us get the word out on social media, using @nnpdf and the hashtag #GivingHOPETuesday.

- Take photos to post on Facebook, Twitter, or Instagram to show your support for of the National Niemann-Pick Disease Foundation.

With your help we can raise NPD Awareness and much needed research funds!

Donations made on Tuesday, December 1st through #GivingHOPE Tuesday will help sponsor research and provide family support to the many NPD families that are members of the NNPDF. By sharing this post you can help provide HOPE to so many in the NPD Community. Go to www.nnpdf.org and click on the “Donate Now” button.

Persist. Quest. Cure.

Day 6 ~ NNPDF #GivingHOPETuesday - We need your help on December 1st, 2015

We’re raising funds on #GivingHOPETuesday to help kick-start our 2015 giving season in support of the critical programs, services and research offered to our NPD patients and their families through the work of the NNPDF.

Not only will the foundation benefit from the funds raised on #GivingHOPETuesday, but we will also earn matching funds from our partner, Network for Good, for gifts given online—Tuesday, December 1st, 2015 ~ making your support go even further.

We need your help, and it’s easy.

- Please consider making your year-end gift on December 1. If you wish to make your gift go further with matching funds, give online at https://donatenow.networkforgood.org/nnpdf?code=Homepage.

- Help us get as many people involved as possible by spreading the word.

- Send an email to your friends, colleagues, and family members sharing your enthusiasm for the NNPDF and our program services. We’d love them to support the foundation on #GivingHOPETuesday, but we also want everyone to support whatever inspires them.

- Help us get the word out about the NNPDF on Facebook and Twitter.

Connect with us at https://twitter.com/nnpdf and use the hashtag: #GivingHOPETuesday

Please do what you can for the families of the NNPDF on this big day. Your generosity WILL have an even stronger impact with the power of #GivingHOPETuesday and with our access to matching funds. Heartfelt thanks for your consideration and generosity. We WILL Persevere in our QUEST for a CURE!

Day 5 ~ NNPDF #GivingHOPETuesday - Can we count on you?

Your passion to support and impact the lives of our patients and family membership affected by Niemann-Pick Disease can go even further on #GivingHOPETuesday .

On December 1, the NNPDF will be joining a national day of generosity, #GivingHOPETuesday. It’s a day when you can make a big impact on the National Niemann-Pick Disease Foundation, our NPD patients and their families.

With your help, we’ll raise funds to continue on with NPD family services programs, support, and referrals, as well as, funding for research into Niemann-Pick Disease.

If you make a gift online this Tuesday, December 1st, the NNPDF will earn matching funds from our partner, Network for Good—making your support go even further.

Check in tomorrow to see how easy it is for you to take part! In the interim, share this post and link with all of your family and friends on Social Media! 

https://donatenow.networkforgood.org/nnpdf?code=Homepage

 

2015 Season of Giving and Thanks!

Dear NNPDF Families and Friends,

The National Niemann-Pick Disease Foundation would like to send everyone wishes for a safe and happy Thanksgiving.

Time and again, our NPD families have shown that, despite the challenges faced, they give thanks for all the opportunities which arise from those struggles through Perseverance, as only NPD families can.

We are very thankful for your continued support and that you allow us into your lives, where we hold you close in our thoughts and our hearts year round.

Best wishes to all for a warm and love-filled Thanksgiving holiday,

~ The Board Members and Staff of the NNPDF

Day 3 ~ NNPDF #GivingHOPETuesday

DOUBLE DONATION DAY! Start your holiday shopping early!! In honor of #GivingHOPETuesday, December 1st, 2015 ~ Bravelets is donating $20 (instead of $10) out of every purchase of all BRAVELETs made on Tuesday, December 1st, 2015!

To help support the programs of the NNPDF and check of items for your holiday gift list, simply visit the Brave Page of the NNPDF and choose a Bravelet design that best fits your style. Won’t you consider joining along with the NNPDF in helping us to give back to our NPD patient community?

Click the link below on 12/1/15 to start shopping and send DOUBLE DONATIONS to the NNPDF so that you too can give the gift of HOPE to our NPD patients and their families.

https://www.bravelets.com/bravepage/becky-s-niemann-pick-awareness-party

Still need to obtain your personalized FaceBook icon and cover page ~ E-mail Beth at: bgreen@nnpdf.org

Day 2 ~ NNPDF #GivingHOPETuesday

Have you shared your #GivingHOPETuesday FaceBook icon and banner highlighting your NPD loved ones photo with all of your family and friends on FB? We are encouraging each family of the NPD foundation to enlist the support of FIVE (5) of your nearest and dearest to update their FB icons and banners with your child’s personalized #GivingHOPETuesday FB icons! It’s not too late to get your FB banner to use in the days ahead as we count down to December 1st, 2015 as #GivingHOPETuesday!

Please remind your supporters that they can offer the gift of HOPE by going to www.nnpdf.org and clicking on the “Donate Now” button! To further highlight their support of your family and the NNPDF, they will receive an “I donated to the NNPDF” FB icon button to point out heartfelt efforts in giving HOPE to all NPD families.

Visit the NNPDF website for more: http://www.nnpdf.org/Newsline2015.html#Hope2

 

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!