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NNPDF Current Fundraising and NPD Awareness Events

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Fundraising and NPD Awareness Updates


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#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!

1. Contact Beth at:  bgreen@nnpdf.org with a photo of your NPD family member so that she can create your personalized #GivingHOPETuesday ~ Facebook icon and banner as shown below:

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2. Upload the personalized #GivingHOPETuesday FaceBook (FB) icons and banners to your personal FB pages and encourage your family and friends to do the same! 

SPECIAL CHALLENGE:

We would like to CHALLENGE each NPD family in our Niemann-Pick Disease Foundation membership to recruit FIVE (5) friends & family members to update their FB icons and cover pages with your special #GivingHOPETuesday graphics! Likewise, encourage them to contact their FB friends and assist with this effort.  Let’s all work together to blanket Social Media with the beautiful faces, smiles and spirit of all our precious loved ones fighting Niemann-Pick Disease! 

3. Watch for daily posts from the foundation during this special week of “Thanks and Giving” which will all lead up to #GivingHOPETuesday, on December 1st, 2015!  The more we all promote and share these updates with your supporters the better able we will be to raise awareness and funds in support of the NNPDF and our programs.

You can learn more about the origins of #GivingTuesday at:http://www.givingtuesday.org/about/  

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 23rd, 2015 ~ blg]

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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

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

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

[Nov 9th, 2015 ~ blg]

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In preparation for Global October Niemann-Pick Disease Awareness month, the NNPDF Central Office has some great ways to get you, your extended family and community involved in raising awareness for NPD!

Upcoming Fundraisers for October Awareness 2015

The following fundraisers in support of the foundation are coming up soon!  Reach out with words of encouragement!  Better yet, if you know of family & friends who live nearby ~ notify them of the event!  The more the merrier!  J

~Ironman World Championship; Kailua-Kona, Hawaii; In honor of Anne O’Connor-Smith (NPB); October 10, 2015 : https://www.crowdrise.com/2015ironmanworldchampionship/fundraiser/mikesmith19

~Crab Cakes for Caleb; Frederick, Maryland; In honor of Caleb Woodard (NPC); October 13, 2015:http://www.nnpdf.org/images/Woodard.jpg

Custom Facebook Cover & Icon Graphics

ALERT!!  October Niemann-Pick Disease (NPD) Awareness Month is just around the corner and affords ALL of our families a great opportunity to get the word out about NPD.  The more people that are aware of NPD GLOBALLY, the faster others will be diagnosed!  So as you begin to get ready for fall ~ please keep the following things in mind:

  • What can the NNPDF Central Office do for you?
  • What can you do to help raise awareness into Niemann-Pick Disease?

The NNPDF Central Office is ready to offer you support and ideas as we ALL get ready to promote October 2015 as GLOBAL October Niemann-Pick Disease Awareness Month!

Do you have your Facebook 2015 October GLOBAL Awareness Month banner yet?  This banner can be used for your Facebook cover page and or as signature-line on your emails.

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Do you have your personalized 2015 October GLOBAL Awareness Facebook Icon with a favorite photo of your NPD loved one?  This is the Icon that will show up when you post on your page or any other page!

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The NNPDF Central Office will be happy to help you create a personalized Icon or Facebook Cover Page/Icon!

It's as easy as "1-2-3" for you to get started by utilizing your Social Media Accounts! 

  1. Simply e-mail the NNPDF Central Office at: bgreen@nnpdf.org
  2. Include a favorite photo of your child (.jpeg or .png is preferred) and advise of their name (first and last), and disease type (NPC, NPA, NPB). 
  3. Please indicate if the icon is in honor of your child/loved one with NPD, or in memory of your child/loved one with NPD.
  4. Let us if you would like a US, Canada, United Kingdom, Germany or Spain e-mail signature banner.

For additional information on the different banners available for participating countries, click here.

All of the information pertaining to October Niemann-Pick Disease Awareness Month can be found at: 2015 October Awareness Month

NPD Awareness Facts of the Day

UPDATE:  We WANT your photos!  The NNPDF will once again be posting the “NPD Fact of the Day” every day in October to help with awareness!  We will utilize photos of ALL our NPD loved ones as we develop these daily posts.  If you are interested in having your loved one’s photo to be included on one of the “Fact Posts” please e-mail them to:  nnpdf@nnpdf.org

We simply need the following:

  • A picture (jpeg or png is preferred of your loved one)
  • Disease type
  • Individuals name (ok to simply provide a first name if you wish)
  • Whether the photo is being posted in honor or in memory of….your cherished family member.

Fundraisers

Don’t forget that October is a great month to hold a fundraiser for the NNPDF.  Monies raised through fundraising go to help fund researchers and to support families.  Our Recipes for Success Cards are a great way to find the right fundraiser for you!  Why not check it out and see if there is one your family can do together!  OR give me a call to talk through some ideas!

Let the NNPDF Central Office know of any events that you are holding for October Niemann-Pick Disease Awareness Month.  We are going to have a map on our October Awareness Month page on the website and we want to color in as many states as possible!!!!  Just send your information to Chris Klauer at nnpdf@nnpdf.org!!!!

[Sep 28th, 2015 ~ blg]

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In preparation for October 2015 as: “GLOBAL Niemann-Pick Disease Awareness Month” the NNPDF Central Office has created an easy to follow list of activities which encompass a wide-range of ways in which each of our NPD family membership and friends can get involved throughout the month.  The activities range from small to LARGE ~ as a community we ask that each of our family membership find a way to help promote and educate about Niemann-Pick Disease. 

Need help?  Contact the NNPDF Central Offices ~ we are more than happy to trouble-shoot and help you to get an idea from the planning state to an “action plan”!  Look over the ideas noted below and check out the NNPDF web page devoted specifically to October 2015 as “GLOBAL  Niemann-Pick Disease Awareness Month".


NNPDF Custom Facebook Cover & Icon Graphics ~ HIGHLIGHT your NPD family member!

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In support of the GLOBAL collaboration between Niemann-Pick Disease patient advocacy groups world-wide, the NNPDF Central Office has designed graphics for a number of our fellow NPD patient advocacy groups.  The staff at the NNPDF utilized the unique logos that identify each participating NPD advocacy foundation and worked them into the 2015 GLOBAL October NPD Awareness Graphic Designs.  (NNPDF Persevere for Life Tree, the CCNNPDF’s Maple Leaf, the UK’s Sunrise Logo, Germany's Rainbow Logo & Spain's Whale Logo ) and combined them together to show our unity and inspire all of our NPD families to come together globally for this united campaign.

For more information on how we can create a custom Facebook cover and icon for your family, please visit our social media signature page: 

If you would like to add a customized signature to your email you can find instructions here:

http://www.nnpdf.org/documents/NNPDFE-mailsignaturelineinstructions_000.html


State Proclamations

Another great and EASY way to raise awareness within your state and community is to have the Governor of your State proclaim October as NPD Awareness Month in your STATE!  The NNPDF provides you with a “step-by-step” process that you can take within your state to obtain your own proclamation.  Since the NNPDF Central Office is in Wisconsin we have already requested our proclamation and it was very simple.  Using the information on the link below, you too, can fill it out and receive your certificate.  Once you have it you can then use it to promote awareness!  Contact the NNPDF at:  nnpdf@nnpdf.org for additional ideas on how to promote your individual proclamations and/or if you need assistance!

Sample Request for a Proclamation


“Thumbs Up for a Cure!”

The Theme that we are going to use to promote the October 2015 as “GLOBAL Niemann-Pick Disease Awareness Month” is:  “Thumbs Up for a Cure!”  This theme will afford many creative ideas and ways for families to incorporate family, friends, and community members into their NPD Awareness efforts through photos, activities, and events.  Here are a few ideas:

~ Photo of your NPD loved on posing with “Thumbs-UP!”  ~ incorporate this photo into your customized FaceBook Graphic Icons and Covers!

~ Thumbprint Rainbows ~ A great and FUN way to get the whole family, school, community involved is to create a poster using thumbprints!

  • Take a Multi Ink Stamp Pad {we found here: Stamp Pad} and then stamp everyone’s thumbprints onto a piece of poster board to make a rainbow shape, trees, flowers, birds, etc….then under the rainbow you can insert the title “Thumb’s Up for a Cure!” ~ FOR ~ add your loved one’s name or photo!
  • Supporters can sign their name on the back of the poster board with well wishes and notes of encouragement and perseverance to your family member!

NOTE:  If you do go to amazon to purchase your ink pad please remember to use Amazon Smiles with the information at the link below to continue to help the NNPDF.

“Persevere for Life” Wristbands

The NNPDF Central Office is offering our popular “Persevere for Life” Wristbands to our membership for free during our 2015 October “GLOBAL Niemann-Pick Disease Awareness Month!” campaigns.

You can order the following quantities in time for your October Awareness Month events:

  • 10-49 wristbands for a donation to cover shipping
  • 50-99 wristbands for $5.00 donation to cover shipping
  • 100-150 wristbands for $10.00 donation to cover shipping

If you would like larger quantities please contact Chris Klauer at nnpdf@nnpdf.org.

Don’t forget that you can go to Road ID and order a band with your loved ones name printed on it and add it to your Persevere for Life Wristband. 

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Just go to www.roadid.com to make your purchase!  The NNPDF will receive a 10% commission from every item sold!  After you order and receive your wristband please be sure to take a picture of your NPD loved one with their wristband on, with a “Thumbs Up!”, showing and sharing with the world their “Thumb’s Up for a Cure!”

Don’t forget, after your completed “thumb-print” rainbow art is completed, be certain to take a picture of your group and/or the final artwork ~ so we can share it with others!


Fundraisers
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Don’t forget that October is a great month to hold a fundraiser for the NNPDF.  Monies raised through fundraising go to help fund researchers and to support families. 

Our Recipes for Success Cards are a great way to find the right fundraiser for you!  Why not check it out and see if there is one your family can do together!

Recipes for Success

If you need assistance with your fundraiser please contact Chris Klauer at nnpdf@nnpdf.org.


Let the NNPDF Central Office know of ANY events that you are holding for October Niemann-Pick Disease Awareness Month.  We are going to have a map on our October Awareness Month page on the website and we want to color in as many states as possible!!!!  Just send your information to Chris Klauer at nnpdf@nnpdf.org!!!!

[Sept 21st, 2015 ~ blg]

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Dateline: 09/14/2015

It Takes A Village….

At the NNPDF we so appreciate those families and friends who are working in their communities to raise awareness and funding in support our patient program services and research protocols towards a treatment and cure for all of our loved ones diagnosed with Niemann-Pick Disease (NPD).

A key element of the success of the foundation over the past 23 plus years, has been the coordination and efforts of all our family membership coming together as ONE family unit (ie:  VILLAGE) in support of every loved one, every family member and every friend affected by a diagnosis of NPD. 

On the eve of October 2015 as GLOBAL Niemann-Pick Disease Awareness month, we would like to remind all of our members as to the support you are able to garner from the NNPDF Central Offices for your efforts.

  • The NNPDF Fundraising Services Plan outlines via a quick guide as to how the foundation and our Central Office staff are able to support you further in your efforts.  “Read All About It” via this link!  NNPDF Fundraising Services Plan

  • If you are planning an event, please contact the NNPDF central offices and let us know how we can help raise awareness of the fundraiser across our web and social media sites.

Current NNPDF Fundraisers and NPD Awareness Events

This week we would like to highlight the next NNPDF event slated for Friday, September 18th, 2015 to benefit the NNPDF!

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NNPDF families are beginning to gear up for this year's October Awareness Month!  Our theme this year will tie into:  “Thumbs UP For A CURE!” 

October is the time to raise awareness about Niemann-Pick Disease! We need to get the word out about this rare disease to doctors, to families, to government leaders, and to the general public. 

Activities can be simple or complex, but please make some time during October to reach out and tell your story!  We invite and encourage each family to look within their family structure, friends and community support networks to create their own team and sponsor an awareness campaign and/or fundraising event during October.

To see how you can help this October, visit the October Awareness Page from last year to see what events were held.  The page will be updated for 2015 as we get closer to October 1st.  Watch that page and your e-mail for updates shortly!

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As always, please don’t forget to contact the NNPDF central offices if you are hosting an event that either raises funds in support of NNPDF programs and services and/or raises further awareness into Niemann-Pick Disease! 

Contact Chris Klauer, Family Services and Marketing Coordinator at nnpdf@nnpdf.org and she will be happy to assist you with planning and fine-tuning your NPD events and awareness activities! 

[Sept 14th, 2015 ~ blg]

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Dateline: 08/17/2015

The NNPDF is so very appreciative of all those in our foundation family membership that are working together raising funds to help support our programs and promote research to find a cure for all of those affected by Niemann-Pick Disease.

Don’t forget that the NNPDF posts all of the upcoming fundraiser’s and awareness campaigns that we are made aware of ~ find a full list here:

Current NNPDF Fundraisers and NPD Awareness Events

This week we would like to highlight the next NNPDF event to benefit slated for Saturday, August 22, 2015 to benefit the NNPDF!

  • 5th Annual Baltimore Orioles Dillon Papier Birthday Benefit

Dillon Papier Flyer

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NEW FEATURE!  NNPDF Family Fundraising & Awareness Campaigns!  NEW FEATURE!

~ On-line Event Registration Pages & Collection of Fees and Donations! ~

Do you need assistance for your event/campaign with attendee’s registration and/or fee collections?  If so, the NNPDF Central Office is here to help!  We have upgraded our web support programs such that we are now able to work with you in developing and established an online registration form so that all of your interested family and community supporters are able to:

  1.  Register for your event online
  2. Pay their registration fees online
  3. And/Or process a donation in support of your event online

NNPDF Liability Insurance Coverage ~ Certificates

Another unique and often requested service that families find the need for when hosting an event is requests for verification certificates indicating that the NNPDF carries appropriate insurance liability coverage! Should you receive and inquiry regarding Insurance Coverage for your event that benefits the NNPDF we can walk you through that process!  There are some restrictions that apply ~ so please check with the office.

The NNPDF Fundraising Services Plan outlines via a quick guide as to how the foundation and our Central Office staff are able to support you further in your efforts. 

“Read All About It” via this link!  NNPDF Fundraising Services Plan

As always, please don’t forget to contact the NNPDF central offices if you are hosting an event that either raises funds in support of  NNPDF programs and services and/or raises further awareness into Niemann-Pick Disease!  Contact Chris Klauer, Family Services and Marketing Coordinator at nnpdf@nnpdf.org and she will be happy to assist you with planning and fine-tuning your NPD events and awareness activities! 

[Aug 17th, 2015 ~ blg]

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When your family and friends reach out to you and ask, “What can we do to help you and your family as you face this diagnosis?,” the foundation has just the recipe for you to pass along to these supportive and generous individuals! 

The NNPDF “Recipes for Success” Cards are a great way to help you to choose a fundraiser that is just right for you!  Better yet, the NNPDF staff will be able to help you with the process and have specific event sponsors/mentors which we can connect you to who have held similar event(s) on behalf of the NNPDF and had overwhelming success. 

This week’s “Recipes for Success” card that we wish to highlight and draw your attention to is hosting an “Art Night”.  An “Art Night” if a fun way to allow your creative side to make an appearance!  Music, food, and drinks along with an opportunity to create that once in a lifetime masterpiece, combined with the fun and fellowship of friends will ensure a night filled with laughter and memories!  An art night doesn’t have to be for adults only!  Kids can have their own “Art Night” and have fun painting and raising money too!

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The NNPDF “Recipes for Success” Cards will give you all the ingredients (supplies) and directions (instructions) needed to help you have a successful event.  The NNPDF “Recipe Cards” also provide you with “quick tips” addressing advertising content, Press Release assistance and  timelines, PLUS helpful hints to ensure you “get the word” out into your community. WAIT….there is more….should you still need suggestions or support ~ Chris Klauer, at the NNPDF Central Office is simply an e-mail or phone call away to answer any questions that you may have!

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Persevere Wristbands

Remember last week we introduced you to the Road ID items that you could purchase? 



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We talked about how you can add your loved ones name to the band to wear on your Persevere Wristband.  The NNPDF office just received a *new* batch of Persevere Wristbands.  There is no better way to raise awareness than by wearing your Persevere Wristband. 
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The Persevere Wristbands are available for $1.00 each and you can order as many as you want.  We have them in for both youth and adult. 

Having a fundraiser?  Why not purchase some to sell at the fundraiser!  Everyone loves to have these! 

Just go to NNPDF Products Order Form to order your posters, wristbands and brochures!

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Don’t forget that the NNPDF posts all of the upcoming fundraiser’s and awareness campaigns that we are made aware of ~ find a full list here:

Current NNPDF Fundraisers and NPD Awareness Events

This week we would like to highlight the next event happening on Saturday, August 1, 2015 to benefit the NNPDF!

  • 10th Annual Ride for Adam ~ For more information contact Carol Laub at 610-760-2832 or 610-417-5012

The NNPDF Fundraising Services Plan outlines how the foundation staff can support you further in your efforts as well.  You can locate it by clicking on:

Fundraising Services Plan

As always, please don’t forget to contact the NNPDF central offices if you are hosting an event that either raises funds in support of  the NNPDF or provides awareness for Niemann-Pick Disease!  Contact Chris Klauer, Family Services and Marketing Coordinator at: nnpdf@nnpdf.org, she will be happy to assist you with events and activities! 

[Jul 27th, 2015 ~ blg]

 

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Dateline: 07/20/2015

Do you have friends and family that are asking how they can help raise awareness or funds in honor of your loved one who has been diagnosed with NPD?  The NNPDF has just the recipe to help them!

The NNPDF “Recipes for Success” Cards are a great way to help you to choose a fundraiser that is just right for you!  Better yet, the NNPDF staff will be able to help you with the process and have specific event sponsors we can connect you with who have held similar event(s) on behalf of the NNPDF and had overwhelming success. 

fThis week’s “Recipes for Success” card that we wish to highlight and draw your attention to is hosting a “Golf Outing”.  A “Golf Outing” to benefit the programs of the NNPDF is a GREAT way to get outside, get some exercise, all while involving your friends, neighbors and community in support of your event ~ and ~ having FUN to boot!  Your “Golf Outing” can be as big or as little as you want.  You can easily include raffle items, auction items and door prizes with your “Golf Outing” or simply choose one area to focus upon. The best aspect is that YOU can create your “Golf Outing” into whatever you want.

The NNPDF “Recipes for Success” Cards will give you all the ingredients (supplies) and directions (instructions) needed to help you have a successful event.  The NNPDF “Recipe Cards” also provide you with “quick tips” addressing advertising content, Press Release assistance and  timelines, PLUS helpful hints to ensure you “get the word” out into your community. WAIT….there is more….should you still need suggestions or support ~ Chris Klauer, at the NNPDF Central Office is simply an e-mail or phone call away to answer any questions that you may have!

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Road ID in Support of NNPDF

The NNPDF is now an affiliate of Road ID.  Road ID is a company that allows its users to wear a bracelet that will speak for you in case of an accident.  They not only carry bracelets but also various other accessories and apparel.  Many of the items here are geared specifically towards runners, bikers, devoted atheletes, etc.


https://www.roadid.com/imagesV3/Retail/IDs/Flex/Product/RoadID_Flex_product.png
NPD Families have the opportunity to order a metal wrap band to use with the NNPDF “Persevere” wrist-bands that are engraved with your loved ones name upon it.  See the Chavez family example at left with Breann’s name added.  Follow this link to order these types of slim badge engraved wraps: 

https://www.roadid.com/builder/Badge/Default.aspx?styleid=226

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However, the NNPDF feels that these “Road ID” bracelets would also be great for our family membership ~ especially our NPD patients who may wander off or have specific health needs that MUST be addressed should a parent or guardian not be in attendance at a time of crisis!

The NNPDF will receive a 10% commission from every item sold!  Do you have a Fitbit?  You can also order a Road ID faceplate to add to your Fitbit with all of your information on it.

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Do you wish to raise awareness in the community with posters that speak to the heart of the foundations efforts on behalf of your loved one faced with the heartbreaking diagnosis of NPD?  If you are interested in utilizing posters to advertise and/or educate community members or attendees at an event, then the NNPDF Central Office can be of assistance!  The foundation has four different posters available to all of our family membership for a nominal cost plus shipping (h24” X w18”). 

 

fThis week we turn the spotlight to the NNPDF poster titled: “If it were true, we wouldn’t be calling you.” poster. The theme of this poster, see example below, focuses on the age-old adage that “An apple a day will keep the doctor away!”  Sadly, as we all know only too well, simply home remedies and cures go only so far when dealing with the ravages of Niemann-Pick Disease!  Our community must rely on the support and generosity of others to financial support us all as we work to find a cure! 

It’s easy to place your order for the NPD Awareness Posters, NNPDF Informational Brochures, Newsletters and Persevere Wristbands from the Central Office.  Just click here for the form:

NNPDF Products Order Form

 

As always, if you have any questions or wish to talk through the options simply drop off an e-mail to Chris Klauer at nnpdf@nnpdf.org  or call her at:  1-877-287-3672.

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Don’t forget that the NNPDF posts all of the upcoming fundraiser’s and awareness campaigns that we are made aware of ~ find a full list here:

Current NNPDF Fundraisers and NPD Awareness Events

This week we would like to highlight two events taking place this Saturday, July 25, 2015 to benefit the programs of the NNPDF!

The NNPDF Fundraising Services Plan outlines how the foundation staff can support you further in your efforts as well.  You can locate it by clicking on:

Fundraising Services Plan

Don’t forget, if you are hosting an event that either raises funds for the NNPDF or provides awareness for Niemann-Pick Disease, please contact Chris Klauer, Family Services and Marketing Coordinator at:  nnpdf@nnpdf.org so that she can assist you with events and activities! 

[July 20th, 2015 ~ blg]

 

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Dateline: 07/13/2015

Do you have friends and family that are asking how they can help raise awareness or funds in honor of your loved one that has been diagnosed with NPD?  The NNPDF has just the recipe for them!

The NNPDF “Recipes for Success” Cards are a great way to help you pick the fundraiser that is just right for you!  Better yet, the NNPDF staff are able to help you with the process and have specific event sponsors to connect you with who have held similar event(s) on behalf of the NNPDF and had overwhelming success. 

Click here to view the Recipes for Success Cards!

This week’s “Recipes for Success” card that we wish to highlight and draw your attention to is a Children’s Carnival.  This is a fun event to do either at the end of the school year, during the summer or at the beginning of the school year!  Everyone loves to play games and win prizes plus who doesn’t love a cake walk.  This is an event that your neighborhood can really rally around your family and offer their support!

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The NNPDF “Recipes for Success” Cards will give you all the ingredients (supplies) and directions (instructions) needed to help you have a successful event.  The “Recipe Cards” also provide you with “quick tips” addressing advertising content, PR timelines and helpful hints to ensure you “get the word” out in your community. WAIT ~ there is more ~ should you still need suggestions or support ~ Chris Klauer, at the NNPDF Central Office is simply an e-mail or phone call away to answer any questions that you may have!

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Niemann-Pick Disease Pandora-esque Beads

Do you have a Pandora bracelet or one that is similar to it?  If so this bead is just the one to add to your collection.  Not only will it add some color and beauty to your bracelet but it will help raise awareness for Niemann-Pick Disease.  The bead will fit Pandora, Chamilia, Biagi, Troll, and most European Bracelets.  

Pandora


Click NNPDF Bead for the form to order your opportunity to raise funds to support research!



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kDo you wish to raise awareness in the community with posters that speak to the heart of the foundations efforts on behalf of your loved one faced with the heartbreaking diagnosis of NPD?  If you are interested in utilizing posters to advertise and/or educate community members or attendees at an event, then the NNPDF Central Office can be of assistance!  The foundation has four different posters available to all of our family membership for a nominal cost plus shipping (h24” X w18”). 

This week we turn the spotlight to the NNPDF poster titled: “They have only their childhood to experience a lifetime” poster. You may have seen this poster recently on other NPDF Family Facebook posts.  It is one that really hits home, tugs at the heartstrings with the reality our families face and targets directly to others of how serious this rare disease is!  The generous support of others will help us find that cure!   


It’s easy to place your order for the NPD Awareness Posters, NNPDF Informational Brochures, Newsletters and Persevere Wristbands from the Central Office.  Just click here for the form:

NNPDF Products Order Form

As always, if you have any questions or wish to talk through the options simply drop off an e-mail to Chris Klauer at nnpdf@nnpdf.org  or call her at:  1-877-287-3672.

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Don’t forget that the NNPDF posts all of the upcoming fundraiser’s and awareness campaigns that we are made aware of ~ find a full list here:

Current NNPDF Fundraisers and NPD Awareness Events

Just a reminder that the following NNPDF Fundraising and NPD Awareness Events are happening this weekend. If you can support them it would be greatly appreciated!

This event is happening on Saturday, July 18, 2015! Please check the event Facebook for more information. 

This event is happening on Sunday, July 19th, 2015!  Please check out the flyer for more information:

The NNPDF Fundraising Services Plan outlines how the foundation staff can support you further in your efforts as well.  You can locate it by clicking on:

Fundraising Services Plan

Don’t forget, if you are hosting an event that either raises funds for the NNPDF or provides awareness for Niemann-Pick Disease, please contact Chris Klauer, Family Services and Marketing Coordinator at:  nnpdf@nnpdf.org so that she can assist you with events and activities! 

[Jul 13th, 2015 ~ blg]

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Dateline: 07/06/2015

Do you have friends and family that are asking how they can help raise awareness or funds in honor of your loved one that has been diagnosed with NPD?  The NNPDF has just the recipe for them!

The NNPDF “Recipes for Success” Cards are a great way to help you pick the fundraiser that is just right for you and links you back to a sponsor at the foundation who held a similar event and had success.

DesouzaOne fundraising idea highlighted in the “Recipes for Success” cards this week is a Home Party!  This event will gather friends together for a night of fun!  You decide on which vendor your friends would love to purchase items from and ask if they would be willing to donate a percentage of their sales to the NNPDF in honor of your loved one facing the challenges of Niemann-Pick Disease.  Gather up some friends and some snacks and have a blast!

Judy Desouza, has held an annual Yankee Candle Fundraiser in memory of her daughter Bryanna and in support of the NNPDF for a number of years now.  She not only does it as a local fundraiser but also as an online fundraiser!  Families of the foundation look for news of her annual event and purchase items in support of her efforts!  You too can join the fun!

The NNPDF “Recipes for Success” Cards will give you all the ingredients (supplies) and directions (instructions) needed to help you have a successful event.  The “Recipe Cards” also provide you with “quick tips” addressing advertising content, PR timelines and helpful hints to ensure you get the word your community. WAIT ~ there is more ~ should you still need suggestions or support ~ Chris Klauer, at the NNPDF Central Office is simply an e-mail or phone call away to answer any questions that you may have!

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Support NNPDF and Be Brave!

These bracelets are a great way to support the NNPDF.  Did you know that the NNPDF receives $10 for every piece of jewelry that is purchased? 

https://www.bravelets.com/img/jewelry/rosa-bracelet/violet/1/1380x880.jpgNew items have been recently added to the NNPDF Bravelet catalog.  You can view them all at: https://www.bravelets.com/bravepage/becky-s-niemann-pick-awareness-party.  There are great choices for men, women and children. 

In the coming weeks we will be highlighting some other options of bracelets that you can also purchase to provide support and awareness for NPD families!

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ggWish to raise awareness in the community with posters that speak to the heart of the foundations efforts on behalf of your loved one faced with the heartbreaking diagnosis of NPD?  If you are interested in utilizing posters to advertise and/or educate community members or attendees at an event, then the NNPDF Central Office can be of assistance!  The foundation has four different posters available to all of our family membership for a nominal cost plus shipping (h24” X w18”). http://www.nnpdf.org/aboutus_19.html#Posters

This week we turn the spotlight to the NNPDF poster titled: “It’s rare…It’s Genetic…It’s Fatal” poster. This poster reminds others that this rare disease needs research to find the cure.  The generous support of others will help us find that cure!   

You can order these posters, NNPDF Informational Brochures, Newsletters and Persevere Wristbands from the Central Office.  Just use this Order Form and you will be all set for your event.

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Don’t forget that the NNPDF posts all of the upcoming fundraiser’s and awareness campaigns that we are made aware of ~ find a full list here: http://www.nnpdf.org/donorinfo_13.html.  The NNPDF Fundraising Services Plan outlines how the foundation staff can support you further in your efforts as well.

Don’t forget, if you are hosting an event that either raises funds for the NNPDF or provides awareness for Niemann-Pick Disease, please contact Chris Klauer, Family Services and Marketing Coordinator at:  nnpdf@nnpdf.org so that she can assist you with events and activities!  

[Jul 6th, 2015 ~ nmh]

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Dateline: 06/29/2015

Have you been thinking about hosting a fundraiser to benefit the National Niemann-Pick Disease Foundation and raise awareness of Niemann-Pick Disease? Not certain where to start or how best to get your idea off of the ground?  The NNPDF CENTRAL OFFICES ~ is here to help you with ideas, resources and support! 

The “NNPDF Fundraising Packet” is a unique guide developed to support our Niemann-Pick Disease Family Community to assist you in getting started and walks you through to the completion of your fundraiser or awareness event.

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The NNPDF “Recipes for Success” Cards are a great way to help you pick the fundraiser that is just right for you and links you back to a sponsor at the foundation who held a similar event and had success.

One fundraising idea highlighted in the “Recipes for Success” cards is an event that will serve a double purpose and help to clean out your house at the same time!  If that peeks your interest, then a “Garage Sale Fundraiser” is the event for you!

The NNPDF “Recipes for Success” Cards will give you all the ingredients (supplies) and directions (instructions) needed to help you have a successful event.  The “Recipe Cards” also provide you with “quick tips” addressing advertising content, PR timelines and helpful hints to ensure you get the word your community. WAIT ~ there is more ~ should you still need suggestions or support ~ Chris Klauer, at the NNPDF Central Office is simply an e-mail or phone call away to answer any questions that you may have!

Remember….not only do you clean out your house, basement and garage but you also raise money and awareness in honor of the loved one in your family living with Niemann-Pick Disease.



Wish to raise awareness in the community with posters that speak to the heart of the foundations efforts on behalf of your loved one faced with the heartbreaking diagnosis of NPD?  If you are interested in utilizing posters to advertise and/or educate community members or attendees at an event, then the NNPDF Central Office can be of assistance!  The foundation has four different posters available to all of our family membership for a nominal cost plus shipping (h24” X w18”). Click here for the order form

This week we turn the spotlight on the “Research Is Our Only Hope” poster. This poster highlights the many faces of our NPD children and young adults bravely taking on the challenges of NPD day-after-day! 

You can order these posters, NNPDF Informational Brochures, Newsletters and Persevere Wristbands from the Central Office.  Just use this this form and you will be all set for your event.

 

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Don’t forget that the upcoming fundraiser’s that the NNPDF Central Office is aware of are located here http://www.nnpdf.org/donorinfo_13.html#Current.  The NNPDF Fundraising Services Plan outlines how the foundation can support you further in your efforts as well.

Don’t forget, if you are hosting an event that either raises funds for the NNPDF or provides awareness for Niemann-Pick Disease, please contact Chris Klauer, Family Services and Marketing Coordinator at:  nnpdf@nnpdf.org so that she can assist you with events and activities! 

[June 29th, 2015 ~ blg]

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Fundraising and NPD Awareness Updates
Dateline: 06/22/2015
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August of 2015 will mark the 13th year that the National Niemann-Pick Disease Foundation (NNPDF) has held an annual “First-Time Fundraiser” contest.  This annual contest serves as a way to encourage and recognize families who have taken their first steps towards raising funds in support of the programs and services provided by the National NPD Foundation. 

The grand prize winner of the annual contest receives a complimentary hotel room for the three nights of the annual Family Conference ~ Thursday, Friday and Saturday!  This year to be held in Chicago, Illinois!

Contest rules are simple:

  • Entrants must be first-time fundraisers with proceeds being raised on behalf of the NNPDF.
  • Fundraising results & receipts must be submitted to the NNPDF Central Office by June 30th, 2015.
  • The 2015 contest year runs from July 1, 2014 —June 30, 2015.  (Events must have been held during this time period.)  First-Time Fundraiser Family Participants (ie: entrant) may have hosted more than one event during that timeframe, with proceeds from all events in that timeframe being forwarded to the NNPDF and counting toward the entrant’s total.
  • NNPDF board members and employees, as well as their relatives are not eligible to participate.
  • The First-Time Fundraiser who raised the most money for NNPDF wins the grand prize three complimentary nights at the Loews Chicago O’Hare Hotel for the 2015 23rd Annual Family Support and Medical Conference! 

If you believe that your fund raising events and efforts may qualify you to be considered in the 2015 NNPDF Annual First-Time Fundraiser Contest, please be certain to contact the foundation Central Offices to inquire as to your family’s eligibility.  Also, PLEASE do not wait to make your hotel reservations — reserve your hotel reservations now to avoid disappointment in not being able to take advantage of the foundations contracted room rates.  If you are the contest winner, the NNPDF will cover the room cost for the three nights of the conference (August 6th, 7th & 8th, 2015).

Fundraising is vital for moving research forward.  If you have been thinking about fundraising, this is the time to jump in.  The NNPDF offers a Fundraising Packet, a Guide to Getting Media Coverage, and “Recipe for Success Cards” to help you get started plus personal Central Office staff support and planning assistance from start to end.

Please contact Chris Klauer, Family Services & Marketing Coordinator at nnpdf@nnpdf.org or call the Central Offices at:  920-563-0930 for more information or assistance.


On May 17, 2015 the 3rd Annual “Walk for Kailey Florkiewicz” occurred in Griffith, Indiana in honor of Kailey (NPC ~ age 11 years).  This exciting event was, once again, a huge success and was capped off by Kailey’s sister, Kenzie, singing the National Anthem!  The rain held off and great fun was had by all.  The NNPDF is grateful to the Florkiewicz family and their supporters in choosing the foundation as the recipient of the event proceeds!  Heartfelt Thanks!   

Interested in hosting a “Run/Walk” event of your own to benefit the NNPDF but don’t know HOW or WHERE to begin?  Simply contact the NNPDF Central Offices ~ we have a “how to” “Recipe for Success” fundraising tool PLUS “one-on-one” staff assistance to address your questions and help to get your event moving forward towards certain success!

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Last week the Central Office Staff highlighted all of the upcoming fundraiser’s slated to be held this summer that we are aware of:  http://www.nnpdf.org/donorinfo_13.html

If you are you hosting an event that either raises funds for the NNPDF or provides awareness into Niemann-Pick Disease, please contact Chris Klauer, Family Services and Marketing Coordinator at:  nnpdf@nnpdf.org so that she can assist you with events and activities! 

[Jun 22nd, 2015 ~ blg]

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Dateline: 06/15/2015

"Alone We Can Do So Little; Together We Can Do So Much"
~ Helen Keller

It takes more than one person to raise funds…

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.

Below are the fundraisers that the NNPDF is aware of that you might be able to take part in. Together we can do so much!

Don’t forget you can also help raise money for the NNPDF by going to the NNPDF Store at http://www.nnpdf.org/store.html.

The NNPDF recently developed a Fundraising and NPD Awareness Services Plan. You can find it a thttp://www.nnpdf.org/documents/FundraisingServicesPlan.pdf. Chris Klauer, Family Services and Marketing Coordinator will be happy to talk you through your fundraising event and assist you with NNPDF resources. Please contact her at nnpdf@nnpdf.org!

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[Jun 15th, 2015 ~ blg]


Current NNPDF Fundraisers and NPD Awareness Events


Boston Marathon Run in Honor of Cassandra Samborski
April 18th, 2015
Boston, MA

Ironman

Anne OConnor-Smith (Adult Type B) will run the Boston Marathon in honor of Cassandra “Cassie” Samborski (January 7, 1994 – December 9, 2015 ~ Niemann-Pick Disease Type B), who courageously fought the NPB battle for 21 years. 

"Cassie was my hero, the same age as my youngest daughter, and one of the toughest, happiest people I have met. I hope to raise awareness by being the first person with ultra-rare Niemann-Pick Type B to run the Boston Marathon.   Please help others who, like me, struggle for many years to obtain a diagnosis.  Hope for treatment begins with a diagnosis!!!"

To donate to this fundraiser, visit Anne's Boston Marathon crowdrise page: https://www.crowdrise.com/runningforrarediseas/fundraiser/anneoconnorsmith

National Organization for Rare Disorders, Inc. wrote - Marathon runners and rare disease community members team up to support all 7,000 rare diseases and help undiagnosed patients find answers. The funds raised for NORD will support the NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.

[Jan 18th, 2016 ~ blg]

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Willow Wicks Candles

Breann
Breann Chavez (NPC)
02/10/2003 - 07/08/2006

Lisa Chavez of New Mexico and Mom to Breann (who passed away in 2006 at age 3 from NPC), hand-crafts the special PERSEVERE candles to benefit the NNPDF. Each Turley Tot Candles has a different picture of a precious moment captured with a pleasant scent to complement. 

$10 of every candle from the Turley Tot Collection will go to the National Niemann-Pick Disease Foundation in a fight to one day cure Niemann-Pick Disease.

Click here to view the Turley Tot Collection and view other candles made with love by Lisa Chavez

 

Recent fundraising and awareness events hosted by families and friends