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March 2015 eNewsletter

 23rd Annual

NNPDF Family Support and Medical Conference

Thursday, August 6th ~ Sunday, August 9th, 2015

Chicago, IL

Dear NNPDF Families and Friends,

The NNPDF is pleased to announce details for the upcoming 23rd Annual NNPDF Family Support and Medical Conference to be held in Chicago, Illinois ~ Rosemont Village on Thursday, August 6th thru Sunday, August 9th, 2015 at the Loews Chicago O’Hare Hotel.

The Village of Rosemont is located just minutes away from the Chicago O’Hare Airport, 20 minutes from downtown Chicago, city transportation and a bustling community with plenty of things for families to do, should you decide you don’t wish to travel into the city of Chicago!  The beautiful Loews Chicago O’Hare Hotel is conveniently situated in the middle of a bustling entertainment, & family attractions and boasts complimentary airport transportation on a 24 hour basis. This 6-year-old hotel comes complete with up-to-date comforts and amenities in each room, friendly and attentive staff, as well as, a relaxing environment ready to meet and exceed all of our NNPDF family membership needs this August 6th – 9th, 2015!

Date: Thursday, August 6th thru Sunday, August 9th, 2015
Hotel:  Loews Chicago O’Hare Hotel
Attractions: The Village of Rosemont

Chicago, IL – Rosemont Village

Conference Hotel Location
Loews ~ Chicago O’Hare Hotel

The NNPDF is very excited to share our hotel location for this year’s Family Conference ~ The Loews Hotel right by the Chicago O’Hare airport!  Conveniently situated in the middle of entertainment & family attraction, this 6-year-old hotel comes complete with up-to-date comforts and amenities in each room, friendly and attentive staff, as well as, a relaxing environment for our family’s to meet this August!

The NNPDF Central Office will be updating our NNPDF family membership and the wider NPD community with conference and hotel registration details as it is developed and more detailed family travel assistance and information as it becomes available.  Keep an eye open for the full gamut of speakers, researchers, clinical trial updates and activities which we have planned on the 2015 NNPDF Family Conference page.

We hope to see you in Chicago, Illinois August 6th ~ 9th, 2015!

Smith Family BReaKthru Fund & Ara Parseghian Medical Research Foundation Win $100,000 for NPC Research 

Dear NNPDF Families and Friends,

Collaboration is a KEY component in so many aspects of the work of the NNPDF in our family support services and research efforts ~ we often reach out to other NPD related agencies in the US and Internationally, and so it was in support of the ESPN sponsored Infiniti Coaches Challenge…….reaching the TOP SPOT for this online challenge was truly a collaborative effort by all. 

We are so pleased to inform the entire Niemann-Pick Disease Community that in great part due to your combined efforts and voting each and every day for Coach Matt Painter, from Purdue University, that the Smith Family BReaKthru Fund and the Ara Parseghian Medical Research Foundation were awarded the TOP SPOT of $100,000 to be allocated towards research into Niemann-Pick Disease Type C!

The Smith Family sent out a personal Thank You via Facebook:

“And we have to thank the passionate NPC community for the perseverance through this challenge. I can tell that behind every NPC family, there is a support network similar to ours that’s ready to lend a hand whenever needed.

Finally, we remember those that we have already lost to NPC and honor those that fight NPC each day. This is victory is for them.

Each year that we have been fortunate to participate in this challenge, the level of support has increased and we expect that won’t change in 2016 when we look to repeat.

Again, thank you all for your continued love and support.

Trent, Julie, Chandlar, Braden, Riley, and Keaton Smith”

This is a HUGE moment for all of our NPD families world-wide who participated and diligently voted every day!  

We WILL Persevere in our Quest for a Cure!

The NNPDF would like to give a special “Shout-Out” in recognition of the David & Rachel Sanda family, who added a creative and personal touch to this on-line project by having their three children pose with signs to vote for Matt Painter. They also hosted an online Facebook event attended by over 200 people to help raise awareness and keep the votes coming in!

It is personal touches and initiatives similar to the Sanda family efforts that help to push this campaign along and we couldn’t be more pleased with the final results!

This campaign was truly a WORLD-wide effort, as we had many different NPD families from all continents all waiting anxiously (and deciphering the time zone changes) for the final results of the voting! 

The NPD community will continue to show their Perseverance time and again throughout the next year and for the Infiniti Coaches’ Charity Challenge in 2016!


World Rare Disease Day  – 2015

Dear NNPDF Families and Friends,

Did you know that an estimated 30 million Americans are affected by a rare disease?!  Special challenges face those with a rare disease such as Niemann-Pick Disease, in getting a diagnosis, gaining access to appropriate treatment, finding support resources, and in advancing essential research.  A disease or disorder is defined (in the U.S.) as rare if it affects fewer than 200,000 Americans at any given time.

This year’s WORLD Rare Disease Day, held on February 28th, 2015, was a truly remarkable event!  There were so many members of the NPD community who participated in and worked to promote February 28th as a Rare day for us all.  The NNPDF Central Offices created, supported and promoted an International social media graphic campaign titled:  “Day by Day.  Hand by Hand”, and there but in many other events being held around the world!

Event Highlights ~ February 28th 2015:

  • Genzyme held several events on February 16th in recognition of Niemann-Pick Disease type B
  • Rare Disease Community Chat with National Institutes of Health via Twitter
  • NNPDF World Rare Disease Graphics for Social Media Awareness Campaign
  • Genes (aka:  Jeans) Day for Rare Diseases
  • State Governor Declares February 27th World Rare Disease Day in Wisconsin, as well as, holding an Annual
  • “Rare Disease Day” Dance Marathon

For a full list of other events held by state: click here.

The NNPDF Central Offices would like to thank everyone who participated in raising awareness this past February 28th for Rare Disease Day.  We did it together ~ Day by day, Hand in Hand!

“2016 will truly be a Rare Day for World Rare Disease Day on February 29th, 2016!  Get ready to plan ahead!”

Vote Jim Green of the INPDA – United Kingdom Volunteer of the Year

Jim Green, President International Niemann-Pick Disease Alliance (INPDA)

Our very own Jim Green, president of the INPDA & volunteer for the Niemann-Pick UK advocacy group has been nominated for Bristina’s Best Volunteer Award.

Anyone who has worked with Jim, whether in a professional or personal setting will know this an honor of which he is very deserving.  Not only did he found the NPD UK and the INPDA, but he is the father of two sons with Niemann-Pick type C.

We wanted to provide our NPD community, who may not know Jim’s work through the INPDA and NPD UK group, the chance to read his bio and discover why he should be voted Britain’s Best Volunteer!

Click here to read Jim Green’s Biography

2015 NNPDF Annual Board Meeting and NNPDF & CCNNPDF Retreat

Back Row from left: Wayne Palmiter, Tammy Vaughan (CC), Heather Patinaude-Taillefer (CC), Sandra Cowie, Ann O’Connor-Smith (G), Beth Green (S), Leslie Hughes, Nicole Farhat-Yanjanin, Bobbi Voison (CC), Chris Klauer (S), Jill Flinton, Rhonda Brown-Kehoe Front Row from Left: Adam Vaughan (CC), Ashraf Ghadban (CC), Nadine Hill (S), Lisa Chavez, Elissa Miller (CC= Canadian Chapter, S = Staff, G=Guest)

The 2015 Annual Board Meeting of the National Niemann-Pick Disease Foundation (NNPDF) was held on Thursday, March 12th thru Sunday, March 15th, 2015, in Chicago Illinois. The NNPDF Board of Directors were joined by members of our sister-chapter, the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF) for a board development and retreat meeting.

The NNPDF and CCNNPDF members of the Board of directors were pleased to welcome our NPD family membership who were able to travel to the board meeting location site throughout the weekend. Thank you to the families who participated in our meeting and contributed valuable feedback.

The entire NPD community wishes to extend a note of thanks and gratitude to the tireless efforts of all our volunteer board of director’s who serve in honor of all NPD patients and their families.

Click the links here to learn more about the NNPDF Board of Director’s or the CCNNPDF Board of Director’s.

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