Day 30 ~ October 2014 as GLOBAL NPD Awareness Month ~ Patients Like Me Additional Details

Dear NNPDF Friends and Families,

Day 30 of our 2014 October GLOBAL Niemann-Pick Disease Awareness Month event, allows us to delve deeper into the PatientsLikeMe (PLM) program and share how it can be used to not only to benefit individual families on behalf of their loved ones diagnosed with NPD, but by our NPD scientists, researchers and doctors as well, who are working diligently towards finding a therapy for Niemann-Pick Disease.

The National Niemann-Pick Disease Foundation is partnering with PatientsLikeMe (PLM), to offer our NPD membership an additional tool to network and communicate with one another.  As social media resources continues to evolve, we have found that the current social media platforms which help us to connect our community (ie:  Facebook, Twitter, the NNPDF Yahoo List serve) don’t fulfill the medical and necessary privacy niche which the PLM platform does.  PatientsLikeMe is the first of its kind when it comes to understanding the medical side of a disease, tracking that information and compiling it into an understandable format for those who enter the database at a later date.  We envision the PLM site for Niemann-Pick Disease to become an essential tool for all of our NPD families ~ a go-to resource in how best to support their loved ones diagnosed with NPD.

For more information, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct30

Day 29 ~ October 2014 as GLOBAL NPD Awareness Month ~ Introduction to Patients Like Me

Dear NNPDF Families and Friends,

With only 3 days left until the end of our GLOBAL Niemann-Pick Disease Awareness month, the NNPDF would like to share a new social media website to our NPD community, called Patients Like Me, where our families can interact, gain support and share their experiences with one another in a private setting.

PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.

PLM will allow our NPD families to share information and build your loved ones health-history on-line and will assist us to build an on-line medical data site which more closely outlines and reflects the progression of Niemann-Pick Disease.  We will be providing more details and support information in the days to come.

Visit the NNPDF Newsline web page for more information: http://www.nnpdf.org/ASMDNews.html#Oct29

Day 28 ~ October 2014 as GLOBAL NPD Awareness Month ~ Think Again. Think NPC.

Dear NNPDF Families and Friends,

A major hurdle we learn of time and again from our NNPDF family membership is the challenge to a diagnosis. Due to this, Niemann-Pick Type C takes, on average, five years to diagnose. Because NPC is treatable this means that patients live for five years without treatment or access to support. 

Think Again. Think NP-C is a campaign identified and developed by the International Niemann-Pick Disease Alliance (INPDA), co-founded by the National Niemann-Pick Disease Foundation (NNPDF), to reduce the time to diagnosis by supporting healthcare professionals who are unfamiliar with NP-C to recognize the key signs and symptoms of the disease. This will help patients by speeding up diagnosis so patients can access treatment and support. 

Early diagnosis means patients can access support, which can improve their quality of life and the lives of those around them. Early diagnosis is also important as NP-C is a treatable disease. Treatment can help to manage the symptoms and can slow down the progression of the disease. 

Visit the NNPDF Newsline web page to learn more: http://www.nnpdf.org/NewsLinePage.html#Oct28

Day 27 ~ October 2014 as GLOBAL NPD Awareness Month ~ International Niemann-Pick Disease Registry

Dear NNPDF Families and Friends,

On the 27th day of our October 2014 GLOBAL Niemann-Pick Disease event, we are continuing with an introduction to the International Niemann-Pick Disease Alliance (INPDA). Today, Day 27, we turn our attention to another project being spearheaded by the INPDA ~ the NEW International Niemann-Pick Disease Registry (INPDR).

In 2013, the INPDA was awarded a grant in support of creating the FIRST International Niemann-Pick Disease Registry (INPDR) database ~ truly a new concept in rare disease registries which will improve the care of Niemann-Pick patients across the world.  The goal is for the INPDR to build and ultimately provide all with accurate numbers of those affected with NPD around the world, as well as, allowing patient advocacy groups globally to support a wider spectrum of families.

A registry is an important tool for collecting and recording information about a disease: how it affects and progresses in an individual patient and how it presents to those involved in diagnosis, treatment and research.

To view the full post, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct27

Day 26 ~ October 2014 as GLOBAL NPD Awareness Month ~ INPDA Key Projects

Dear NNPDF Families and Friends,

Today we're highlighting the key projects the International Niemann-Pick Disease Alliance (INPDA) are working on to not only assist with the over-all patient & family experience, but how working collaboratively with scientists, researchers and doctors could one day speed up the process of diagnosis.

Visit the Newsline for the full post: http://www.nnpdf.org/NewsLinePage.html#Oct26

Day 25 ~ October 2014 as GLOBAL NPD Awareness Month ~ International Niemann-Pick Disease Alliance (INPDA)

Dear NNPDF Families and Friends,

As we close out week four of our 2014 October GLOBAL Niemann-Pick Disease Awareness Month, we would like to turn our focus towards the GLOBAL impact that Niemann-Pick Disease (NPD) has as it affects individuals of all nationalities and in all countries around the globe.  

While the NNPDF and CCNNPDF work diligently to extend support to any and all families who reach out to us for support, there are times where distance and language do become barriers in offering support for a specific NPD family need. 

Identifying that Niemann-Pick Disease doesn’t discriminate and is diagnosed around the world, the NNPDF and the NPD Group United Kingdom co-hosted the initial gathering of established international NPD patient advocacy groups.  From that initial meeting in October of 2009, the International Niemann-Pick Disease Alliance (INPDA) was formed. 

For more information on the INPDA, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct25

Day 24 ~ October 2014 as GLOBAL NPD Awareness Month ~ Genzyme ~ Camebridge, MA Offices ~ GLOBAL NPD Awareness Day

NEWSLINE:  Genzyme Pharmaceutical Main Offices ~ Cambridge, MA!

Genzyme Pharmaceutical employees and ASMD team leaders scheduled time to recognize October 2014 as GLOBAL Niemann-Pick Disease Awareness Month at their main offices in Cambridge, MA today (10/24/14).

Genzyme welcomed NNPDF Board of Director’s member, Eilssa Miller-Visoky, for special presentations and recognition throughout the day highlighting NPD patient advocacy efforts to raise awareness into Niemann-Pick Disease.

Elissa was was able to meet with Genzyme employees and ASMD team leaders at the Framingham, MA manufacturing plant, as well as, during a lunch reception at the Genzyme main offices in Cambridge to raise awareness for October 2014 GLOBAL Niemann-Pick Disease Awareness Month!

Visit the NNPDF Newsline web page for the full post: http://www.nnpdf.org/NewsLinePage.html#Oct24

Day 23 ~ October 2014 as GLOBAL NPD Awareness Month ~ NPD Clinical Trials

Dear NNPDF Families and Friends,

On the 23rd day of our 2014 October GLOBAL NPD Awareness month event, we're taking the time to give special recognition to our NNPDF family efforts and how our families have brought us to this new threshold of therapeutic treatments for both Niemann-Pick Type C, as well as, acid sphingomyelinase deficiency (ASMD).

The members of the National Niemann-Pick Disease Foundation would like to offer a genuine note of thanks and heartfelt gratitude to the many individuals, families, community members, advocacy groups, as well as, esteemed members of the research and scientific community who all came together in a truly collaborative effort to see this process through to the below clinical trials. 

The kindness and generosity of the Niemann-Pick Disease Community ensures that essential research and clinical trials will continue as we Persevere in our quest for a cure!

Visit the NNPDF Web page to see all the most recent updates on current NPD Clinical Trials: http://www.nnpdf.org/NewsLinePage.html#Oct23

Day 22 ~ October 2014 as GLOBAL NPD Awareness Month ~ Dr. Andrew Munkacsi's Research

Dear NNPDF Families and Friends,

Marching right along with October 2014 as GLOBAL NPD Awareness month event, Day 22 day provides us with an opportunity to share research news from the laboratory of Dr. Andrew Munkacsi, who recently completed his Peter G. Pentchev research fellowship.

Trained at Columbia University Medical Center and the University of Minnesota, Dr. Munkacsi is a translational research scientist using high-throughput genomic, lipidomic, and metabolomic approaches to investigate human disease, human nutrition, molecular evolution, and functional biodiversity. His current laboratory at the Victoria University of Wellington opened in July of 2012.  Dr. Munkasci’s latest update is of key importance as his work ties to the recently announced NIH Clinical trial for NPC Adults to study the safety and tolerability of vorinostat. 

Project Title: 

"Defining the molecular basis of HDAC inhibitors to treat murine, feline, and human models of NPC" 

Visit the NNPDF Newsline web page to view the final research report: http://www.nnpdf.org/NewsLinePage.html#Oct22

Day 21 ~ October 2014 as GLOBAL NPD Awareness Month ~ Dr. Charles Vite's Research

Dear NNPDF Families and Friends,

In tandem with our October e-Newsletter publication, Day 21 of October as GLOBAL NPD Awareness month, we continue to updates related to the efforts of the foundations funded researchers. In this case, the valuable work of Charles Vite, Ph.D, and the invaluable work that he has been doing with the naturally-occurring Niemann-Pick Type C in cats at the University of Pennsylvania ~ School of Veterinary Medicine.

Dr. Vite's work has been co-sponsored by the National Niemann-Pick Disease Foundation (NNPDF) and the Canadian Chapter of the NNPDF since August of 2011. In ecently was granted a second research grant to continue on with his significant work associated with Niemann-Pick Disease Type C. 

The NNPDF Central Offices recently received his most recent progress report which we would like to share with you.

Visit the NNPDF Newsline web page to view the latest progress report: http://www.nnpdf.org/NewsLinePage.html#Oct21

October 2014 NNPDF e-Newsletter now available!

Dear NNPDF Families and Friends,

October 2014 NNPDF e-Newsletter now available! Highlights include:

 ~ October Awareness Month Focus ~ NNPDF Research 

 ~ NNPDF 2014 Persevere Award Recipient 

 ~ Tribute to Dr. Peter Pentchev & Dr. Edward Schuchman 

 ~ 2014 NNPDF Fellowship Grant Recipients 

 ~ NNPDF & CCNNPDF Awarded Genzyme's PAL Award 

 ~ 31 Days of October ~ October Awareness Recap

Visit the NNPDF Newsline web page to view the October 2014 e-Newsletter:http://www.nnpdf.org/NewsLinePage.html#OcteNews

Day 20 ~ October 2014 as GLOBAL NPD Awareness Month ~ Perseverance Award

Dear NNPDF Families and Friends,

On the 20th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness month event, we're switching over to how the NNPDF has come to recognize individuals within the Niemann-Pick Community for their Perseverance in a Quest for a Cure!

The Persevere Award is presented to an individual who has integrated the mission of the National Niemann Pick Disease Foundation into his/her life. This person supports and promotes research to find a cure for all type of Niemann Pick Disease and provides support for affected individuals and families. This person has gone above and beyond the call of service to the Niemann Pick Disease community and will Persevere in the fight against Niemann Pick Disease.

In 2014 the NNPDF handed out its first ever Perseverance Award to Dr. Dan S. Ory at the NNPDF Family Support and Medical Conference in San Francisco, California.

For the full post, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct20

Day 19 ~ October 2014 as GLOBAL NPD Awareness Month ~ Tribute to Dr. Edward Schuchman

Dear NNPDF Families and Friends,

On the 19th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness month event, we're continuing to look into the research professionals who have had a profound effect on the history of Niemann-Pick Disease and the National Niemann-Pick Disease Foundation fellowship grants.

Today we're highlighting the work of Dr. Edward J. Schuchman and his innumerable contributions to acid sphingomyelinase deficiency (ASMD, also known as Niemann-Pick disease types A and B) research ,as well as, our ASMD community.

To view the full post, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct19

Day 18 ~ October 2014 as GLOBAL NPD Awareness Month ~ Tribute to Dr. Peter Pentchev

Dear NNPDF Families and Friends,

Now that we have introduced you to our 2014 NNPDF Funded Fellowship recipients, we're using our 18th day to highlight the extraordinary and groundbreaking work of Dr. Peter G. Pentchev both within the field of research, as well as, our Niemann-Pick type C community. In special recognition and to let Peter know how his life’s work has inspired so many we have named our fellowship grants after Peter as the Peter G. Pentchev Research Fellowships. 

For the full post, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct18

Day 17 ~ October 2014 as GLOBAL NPD Awareness Month ~ NNPDF & CCNNPDF Funded Fellows

Dear NNPDF Families and Friends,

As we continue our focus on foundation funded research this week, the 17th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness month event, we are highlighting another 2014 research award recipient. The National Niemann-Pick Disease Foundation (NNPDF), along with the Canadian Chapter of the NNPDF, are pleased to announce to our NPD communities in the United States and Canada ~ the 2014 recipients of the Peter G. Pentchev & Edward H. Schuchman 2014 Fellowship awards and grants!

For Day 17, we turn our focus to the announcement of a research grant award in support of our NPD Type C (NPC) community through the funding of scientific efforts to develop a roadmap for NPC drug development. Kanagaraj Subramanian from The Scripps Research Institute in La Jolla, CA is the grant award recipient and Principal Investigator of this work.

Project Title:

"Roadmap for Drug Development for Niemann-Pick Disease"

The objective of this research proposal is to develop a new class of therapeutics that could rescue the folding
and trafficking defect of most NPC1 variants found in the clinical population.

Visit the Newsline for the full post & project summary: http://www.nnpdf.org/NewsLinePage.html#Oct17

Day 16 ~ October 2014 as GLOBAL NPD Awareness Month ~ NNPDF & CCNNPDF Funded Fellows

Dear NNPDF Families and Friends,

As we continue our focus on NNPDF funded research this week, the 16th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness month event, affords us the opportunity to continue highlighting another 2014 research award recipient.

On Day16, we turn our focus to the announcement of a research grant award in support of our NPD Type C (NPC) community through the funding of scientific efforts related to the development of neurophysiological outcome measures for treatment assessment.  Dr. Gizely Andrade, who many NPD families may remember from the San Francisco Family Conference for her EEG study, continues her research from the Albert Einstein School of Medicine in New York as the grant award recipient and Principal Investigator of this work.

In addition to her newly funded research grant, Dr. Andrade has shared with the NNPDF an earlier publication tied to her research which included three Niemann-Pick Disease Type C patients who took part in an earlier related study.  You can find the article on the NNPDF Newsline: http://www.nnpdf.org/NewsLinePage.html#Oct16

Project Title: "Developing Neurophysiological Outcome Measures for Treatment Assessment in Niemann-Pick type C (NPC) Disease."

This project will use non-invasive electroencephalography (EEG) and behavioral tasks to examine the integrity of basic sensory transmission in the brain, connectivity between different brain areas, and the brain's ability to benefit from multi-sensory information. This will be the first study to examine multisensory integration in children with Niemann-Pick Type C disease (NPC) and we will monitor for changes in multisensory processing as patients undergo treatment in the cyclodextrin clinical trial.

For more information on the new NNPDF Fellowship award recipients visit the NNPDF website Newsline: http://www.nnpdf.org/NewsLinePage.html#Oct16

Day 15 ~ October 2014 as GLOBAL NPD Awareness Month ~ NNPDF & CCNNPDF Funded Fellows

Dear NNPDF Families and Friends,

As we continue our focus on foundation funded research this week, the 15th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness month event, we are highlighting another 2014 research award recipient. The National Niemann-Pick Disease Foundation (NNPDF), along with the Canadian Chapter of the NNPDF, are pleased to announce to our NPD communities in the United States and Canada ~ the 2014 recipients of the Peter G. Pentchev & Edward H. Schuchman 2014 Fellowship awards and grants!

Due to the tireless efforts of our US & Canadian NPD family membership over fiscal year 2013, the foundations will be supporting four new research fellowship and scientific grant laboratories associated with Niemann-Pick Disease. To learn more about the NNPDF & CCNNPDF Research Funding Strategies ~ please follow this link: http://www.nnpdf.org/NewsLinePage.html#Oct13 

For Day 15, we turn our focus to the announcement of a research grant award in support of our NPD Type C (NPC) community through the funding of scientific efforts to develop a diagnostic test for NPC screening in newborns. Dr. Xutian Jiang, Ph.D from Washington University in St. Louis is the grant award recipient and Principal Investigator of this work.

For the full research lay summary and additional information, visit the NNPDF Newsline: http://www.nnpdf.org/NewsLinePage.html#Oct15

Day 14 ~ October 2014 as GLOBAL NPD Awareness Month ~ NNPDF & CCNNPDF Funded Fellows

Dear NNPDF Families and Friends,

On the 14th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness month event, the National Niemann-Pick Disease Foundation (NNPDF), along with the Canadian Chapter of the NNPDF, is pleased to announce to our NPD communities in the United States and Canada ~ the 2014 recipients of the Peter G. Pentchev & Edward H. Schuchman 2014 Fellowship awards and grants!

Due to the tireless efforts of our US & Canadian NPD family membership over fiscal year 2013, the foundations will be supporting four new research fellowship and scientific grant laboratories associated with Niemann-Pick Disease.  To learn more about the NNPDF & CCNNPDF Research Funding Strategies ~ please follow this link: http://www.nnpdf.org/NewsLinePage.html#Oct13

First on the docket, is a research grant award in support of our NPD Type A & B (ASMD) community through the funding of a research study to describe the natural history of NPD type A and B with Dr. Melissa Wasserstein, MD at the Mt. Sinai School of Medicine as the Principal Investigator.

For the full research lay summary and additional information, visit the NNPDF Newsline: http://www.nnpdf.org/NewsLinePage.html#Oct14

Day 13 ~ October 2014 as GLOBAL NPD Awareness Month ~ NNPDF Funded Research

Dear NNPDF Families and Friends,

As we all work to usher in this third week of October and the 13th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness month event, will focus on an IMPORTANT role which the National Niemann-Pick Disease Foundation (NNPDF), in collaboration with the Canadian Chapter of the NNPDF plays in the area of forwarding NPD research. The collaborative efforts of the NNPDF & CCNNPDF towards empowering all of our family memberships fundraising.

A key element to both foundations’ research strategy is the ability to track funds raised within the communities of our family membership. Great care is given to identify all monies received at the NNPDF/CCNNPDF Central Offices through family fundraising efforts so that a specific designation by disease type and a restriction towards research can be made. The NNPDF/CCNNPDF is proud to ensure our family membership that 100% of the funds raised through their community events are directed towards NPD research!

Due to the tireless efforts of our NPD family membership over 2013, the foundations will be supporting four new research fellowship and scientific grant laboratories associated with NPD. We will highlight the specific grants and the program details over the next week ~ one grant tied to the medical/clinical support of NPD Types A & B (ASMD) families and three fellowship grants with focus on NPC. 

It is important to note that none of this would be possible without the continued support and personal Perseverance of our NPD family membership on behalf of your loved ones affected by Niemann-Pick Disease.

For more information on NNPDF funded fellowships and grants, please visit the Newsline on the NNPDF web site: http://www.nnpdf.org/NewsLinePage.html#Oct13

Day 12 ~ October 2014 as GLOBAL NPD Awareness Month ~ Persevere Jewelry

Dear NNPDF Families and Friends,

On the 12th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness month event, the NNPDF is promoting to our family membership two very specific NPD products which benefit the foundation!

Heartfelt thanks to support from NNPDF Board Member, Becky McGuire, in loving support of her cousin, Kelly Thompson (NPC), the NNPDF has our very own "Pandora-esque" bead for charm bracelets and a specific line of Bravelets jewelry.

To view the full post on how to order this Persevere Awareness jewelry, visit the NNPDF Newsline on the web site: http://www.nnpdf.org/NewsLinePage.html#Oct12

Day 11 ~ October 2014 as GLOBAL NPD Awareness Month ~ Persevere Wristband

Dear NNPDF Families and Friends,

As we usher in the 11th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness Month event, our focus turns to the NNPDF “Persevere for Life” wristbands and how you can put them to good use towards raising NPD Awareness this October and year-round!

The popularity of wristbands cannot be denied, as they are not only a simple way to promote your cause, but are a constant reminder of who we are fighting for in our Quest for a Cure! 

The “Gift of Hope” for a better tomorrow for all NPD patients and their families.

For more information and order form for the Persevere wristbands, visit the Newsline on the NNPDF web page: http://www.nnpdf.org/NewsLinePage.html#Oct11

Day 10 ~ October 2014 as GLOBAL NPD Awareness Month ~ PersevereWear

Dear NNPDF Families and Friends,

The 10th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness Month event, the foundation is highlighting our PersevereWEAR and the two ordering options available to our NPD families and friends! Standard PersevereWEAR or Custom “Event” PersevereWEAR are both easy to order and have on hand for your event.

Are you planning an NPD Awareness campaign and want to ensure that your event will stand out? Perhaps you just want to raise NPD Awareness while you are out and about? We have the solution for both events via our Standard and Custom “Event” PersevereWear. 

While most people associate the “PersevereWEAR” with fundraising, they also make wonderful gifts for friends and family! Winter is upon us with the holiday’s right around the corner and a warm sweater can go a long way in keeping loved ones warm, while helping to raise awareness into Niemann-Pick Disease.

The Standard PersevereWear e-shop has a large selection of pre-made Persevere shirts & headgear available for purchase. These items were available for purchase at the 2014 NNPDF Family Support and Medical Conference, so if you did not have an opportunity to attend or if the shirt you wanted sold out, now is your chance to get it!

For more information on PersevereWear, visit the NNPDF Newsline web page at: http://www.nnpdf.org/NewsLinePage.html#Oct10

Day 9 ~ October 2014 as GLOBAL NPD Awareness Month ~ Recipes for Success!

Dear NPD Families and Friends 

The 9th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness Month event, offers us the opportunity to highlight with our foundation membership just ONE of many ways in which the NNPDF is able to support NPD family fundraising and awareness campaign events throughout the year! If you've never done a fundraiser, or just want more ideas, then these fundraising “Recipes for Success” cards are for you! 

This is a time when ~ too many cooks in the kitchen ~ is a GOOD thing!

For more information on the "Recipe for Success" cards, visit the Newsline page on the NNPDF website: http://www.nnpdf.org/NewsLinePage.html#Oct9

Day 8 ~ October 2014 as GLOBAL NPD Awareness Month ~ Informational NPD Product

Dear NNPDF Families and Friends,

On the 8th day of our GLOBAL October 2014 Niemann-Pick Disease Awareness Month event, we are focusing on the informational NPD Awareness products available.

Whether you are holding a fundraiser or wish to provide information for the general public, friends or relatives, the National Niemann-Pick Disease Foundation has a wide supply of informational products to help you raise NPD Awareness in your community!

These items are available to our NNPDF family membership at low donation costs and discounted shipping to encourage families to distribute these within their community through NPD Awareness campaigns and fundraising events.  So, while brochures, flyers and newsletters are free of charge, we ask that a nominal donation and discounted postage rate for wristbands and posters to help defray the cost of printing and shipping.

Remember! If you are planning an event for October NPD Awareness Month please advise the NNPDF Central Office so that we can share it with the community on the NNPDF web site!

For more information on NNPDF informational products, visit the Newsline page on the NNPDF website: http://www.nnpdf.org/NewsLinePage.html#Oct8

Day 7 ~ October 2014 as GLOBAL NPD Awareness Month ~ NNPDF Equipment Exchange Program

Dear NNPDF Family and Friends,

For Day 7 of October 2014 GLOBAL Niemann-Pick Disease Awareness Month ~ we are highlighting the Foundation's Equipment Exchange program, which assists our NPD families to obtain medical equipment that they may not have access to or which isn’t covered under medical insurance. In addition to providing these services, the NNPDF Central Office Staff also assists in finding new homes for medical equipment and supplies which families are no longer utilizing for their loved ones.

As the NPD patient and family needs change during a chronic illness, there may be equipment stored in homes no longer being used which could be put to use by another family in the foundation. Our goal at the NNPDF is to ensure that all NPD families have access to necessary medical equipment and supplied needed to assist their loved ones affected by Niemann-Pick Disease.

The foundation will post and manager a log on the foundation web site describing the type of available equipment, as well as note the specific medical equipment needs that a particular family may be searching for.

This program is being funded in large part by the Jami and Lisa Chavez family in memory of their daughter, Breann, who passed away from NPD Type C in June 2006, at the age of 3 years. The families annual "Ducks for Bucks" event generates the funds needed to offset the costs of shipping equipment from home to home.

For more information on donating to a family in need, or looking for equipment for your family, visit the Newsline page on the NNPDF website: http://www.nnpdf.org/NewsLinePage.htmlOct7