For Those We Lost in 2013

As we move into 2014, we wish to take time to remember all those we lost in 2013 and to honor all those still battling Niemann-Pick Disease. 

Top Row: Gregorio Noel Martinez III (NPA), Amber Ashlee Jelsma (NPA),
Tylor White-Richardson (NPC), Joseph "Chase" Jackson (NPC), Mario Ismael Najera (NPC) 
Center Row: William Chad Mayo (NPC), Dana Jesse Marella (NPC), Jerry James Wilson (NPC) 
Bottom Row: Quinn Madeleine Linzer (NPA), Lily Anna Beaupre (NPA), Riley Gene Robbins (NPA), Taylor Marie Wauters (NPC)

To make a tax deductible donation in their memory, or in memory/honor of a loved one you can visit the NNPDF Donation Page.

Holiday Greetings!

The above card was drawn by Marcello Minotti, Patient Advocate from Argentina, and sent to the patient advocate foundations around the world listed above.

We want to wish our entire community a safe and happy holiday.

12 Days, 12 Ways ~ Caring for the Caregiver ~ Day 11

On the Eleventh "Day and Way" of Caring for the Caregiver

~Know Your Limitations~ 

As we worked on our countdown toward the Holiday’s this month, we touched upon the idea of “Knowing Your Limitations” a few times, especially by offering you ways to take care of yourself as a caregiver. By placing a focus towards yourself ~ physically, emotionally & mentally~ you are assuring that you are following the cardinal rule of caregiving: 

~ Take care of yourself so you CAN take care of your loved one. ~ 

Visit the Newsline for the full post!

12 Days, 12 Ways ~ Caring for the Caregiver ~ Day 7

On the Seventh "Day and Way" of Caring for the Caregiver

~ Explore Community Resources and Connect Yourself to Them ~

There are many programs available to family caregivers, both locally and online. These programs not only provide information about care giving, such as available services and how to gain access to them, but also provide information on counseling resources and access to support groups in your area. 

The NNPDF Central Offices have identified two useful web site resource programs which assists the user in tracking down and identifying available services for caregivers, not only online but within your own community. Through them, you can connect with other individuals in your community who clearly understand your situation and are eager to assist in giving you a supporting hand.

Visit the Newsline for the full post!

12 Days, !2 Ways ~ Caring for the Caregiver ~ Day 6

On the Sixth "Day and Way" of Caring for the Caregiver

~ Take a Break Every Day~

Previous posts have addressed the importance of taking care of yourself as a caregiver, but it is certainly easier said than done, especially when your entire day is focused on caring for the needs of those you hold dear. 

One of the easiest things you can do when planning your day is to find ways to incorporate mini-breaks to focus on yourself. They don't have to be long or involved and can be spread throughout the day to ensure that you are not only getting enough time for yourself, but that these breaks are not interrupting your required daily routines.

Visit the Newsline for some suggestions as to how you can work both the time and the break into everyday life without giving up or imposing upon your important care routines.

12 Days, 12 Ways ~ Caring for a Caregiver ~ Day 3

On the Third "Day and Way" of Caring for the Caregiver

~ Give Yourself Permission to Have a Good Cry~

No matter what we do to try and manage our time and our stress levels, there is one important aspect, which could be perceived as an unfavorable part of life but can actually have positive benefits. Today, our “Care for the Caregiver ~ 12 DAYS and 12 WAYS” will focus is on why it's important to give yourself permission to cry.

Visit the Newsline to see the full post!

Check back in again over the weekend, as we highlight on the 4th day of “12 Days and 12 WAYS” the “NNPDF gave to you” the ability to get proper rest every night. 

Tylor White-Richardson ~ 09/11/1996 - 12/12/2013

Tylor White-Richardson ~ NPC

Hello My Dearest NNPDF Families and Friends,

We received heartbreaking news today from Jennifer White-Richardson, that her beloved son, Tylor (Ty) White-Richardson (NPC, age 17) passed away today (09/11/1996-12/12/13). So many in the NPD community will remember Ty and his Mom taking to the dance floor at the family conferences for their annual "Mother & Son" dance. 

In Baltimore, Maryland this summer ~ Ty also stole the show while break dancing with a long neon pink wig on! Whenever anyone thinks of Ty ~ they will remember a tall, handsome young man who was always ready with a thumbs-up and a quick smile that would simply light up the room. Not to mention that he was absolutely the BIGGEST Brett Favre Packer Fan ever known!

Jenn and family ~ we are all crushed to learn that your precious son, Ty, has lost his courageous battle with NPD. He is a true inspiration to all that had the pleasure to meet and get to know him.

With tears and heavy hearts ~ Nadine and all of the NNPDF families

Ty and his hero, Brett Favre in 2008 

12 Days, 12 Ways ~ Caring for a Caregiver ~ Day 1

Dear NNPDF Friends and Family,

December brings holiday excitement, a magical time of the year for children and adults to get caught up in the hustle and bustle of wrapped gifts, family gatherings, good food and the wonder and hope that a new year will bring into their lives.

For our Niemann-Pick Disease families though, the holiday season can be both difficult and overwhelming. The disease slowly chipping away at our loved ones doesn't take a holiday vacation and the unending grief of having lost a loved one to NPD becomes amplified with the passage of another year. 

Beginning today, Wednesday,December 11, and counting down the next ~ 12 DAYS ~ towards the holidays, we will be highlighting ~ 12 WAYS ~ to Care for a Caregiver this holiday season. These 12 WAYS were specifically identified as ways to reduce stress during the upcoming hectic holiday season and assist the Caregiver in taking time for yourself in 2014! 

We also want to ask those individuals who know of a Caregiver in their lives, to take the time to reach out in thoughtful and loving support this holiday season. In the upcoming “12 DAYS & 12 WAYS” countdown, we will also be offering suggestions on how best you can offer a helping hand to those important and selfless Caregivers in your lives.

On the First "Day and Way" of Caring for the Caregiver 

~Take Care of Yourself Physically ~ 

Visit the Newsline to see the full post!

Ara Parseghian Medical Research Foundation Announces HDACi Clinical Trial

Dear Families and Friends,

We received an update from Cindy Parseghian, President of the Ara Parseghian Medical Research Foundation, in regards to a clinical trial planned in 2014 for Histone Deacetlase Inhibitor (HDACi).

"We are pleased to announce a clinical trial in a Histone Deacetylase Inhibitor (HDACi) for the treatment of NP-C disease in the summer of 2014. A group of dedicated researchers are collaborating closely to move a HDACi to trials. To read more about the trial please visit the Ara Parseghian Medical Research Foundation web page at www.parseghian.org or the Foundation Facebook page.  More information will be forthcoming as the details of the trial are determined. Patient enrollment will be announced after the trial is approved by the FDA.

~ Cindy Parseghian"

For more information, visit the new HDACi Clinical Trial Page.

Wall Street Journal Follow-Up Article: Trials: A Race to Save a Boy

Wall Street Journal Follow-up Article:

Trials: A Race to Save a Boy 

As a follow-up entry to the Wall Street Journal Article, "Trials: A Desperate Fight to Save Kids and Change Science", Amy Dockser Martin blogs about her time with the Papier Family.

The blog is a photo album, following Dillon through his first surgery in February, a typical day for the Papier family between home & school life, as well as once the Cyclodextrin clinical trial resumed. Like the original article, it's a fascinating and intimate look into one family's fight to save their child's life. 

As Darrile Papier has said, "There has to be a first child who survives Niemann-Pick Disease. Why couldn't it be Dillon?" 

To view the article: Click HERE

NNPDF Winter 2013 e-Newsletter Available!

Dear Families and Friends,

The latest e-Newsletter was just sent out and is available as a precursor to our 12 Days, 12 Ways campaign. 

We'll be counting down the 12 days till Christmas, highlighting each day a way our caregivers can take care of themselves during this busy and sometimes stressful season. We also pay tribute to those we've lost in 2013. 

The NNPDF Staff wishes you all a safe, warm and happy holiday season!

NNPDF Winter 2013 e-Newsletter

Worldwide Candle Lighting ~ Sunday, December 8th, 2013

Dear Friends and Families,

The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor the memories of the sons, daughters, brothers, sisters, and grandchildren who left too soon. As candles are lit at 7:00 p.m. local time, hundreds of thousands of persons commemorate and honor the memory of all children gone too soon.

Now believed to be the largest mass candle lighting on the globe, the 17th annual Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. 

Please join us in honoring those who lost their fight with Niemann-Pick Disease in 2013, and all those who were gone too soon

http://www.nnpdf.org/NewsLinePage.html#Candle.

Reddit AMA with Dr. Chris Austin & Amy Marcus - Discussion Now Available in PDF

Dear Families and Friends,

A PDF copy of today's Reddit discussion with Dr. Chris Austin from NIH's NCATS & Amy Dockser Marcus of the Wall Street Journal is available for your convenience.

Reddit AMA (PDF)

For more information on the discussion visit the Newsline

Reddit AMA - Rare Diseases and Research Process

!!~ Community Alert ~!! 

Reddit "Ask Me Anything" Hosted by Dr. Chris Austin & Amy Dockser Marcus 

Wednesday, December 4th ~ 1:00 p.m. ET

Dear Families and Friends,

Dr. Chris Austin from National Institutes of Health's National Center for Advancing Transitional Sciences (NCATS) will join Amy Dockser Marcus of the Wall Street Journal for a Reddit AMA (short for “Ask Me Anything) at 1 p.m. ET on Wednesday, December 4.

Date: 12/04/2013, 1:00p.m. (ET)
Title: Reddit AMA: Rare Diseases and the Research Process
Participants: Everyone welcome!
Hosts: Dr. Chris Austin (NCATS) and Amy Dockser Marcus (Wall Street Journal)
Where: Reddit's Ask Me Anything (direct link pending)

The discussion is open for everyone to participate as Dr. Austin & Amy Dockser Marcus answer readers’ questions about rare diseases and the research process.

Visit the Newsline for the direct link once it becomes available tomorrow.  Stay tuned!

National Giving Tuesday!

Dear Families and Friends,

We provided you with ways to benefit the National Niemann-Pick Disease Foundation in prep for Black Friday, which included plenty of online options to shop on Cyber Monday. Today, December 3rd, is #GivingTuesday - a national day to give to charities!

Today millions of American’s will make a difference by participating in this new national day of giving! Will you join them and jump start the holiday giving season with a gift to the NNPDF?

Visit the Newsline to find out how YOU can contribute!

Your generosity today will help us in continue to Persevere towards our Quest for a Cure. One day we will stand together hand in hand in celebration that a cure has been found for Niemann-Pick Disease!

Shopping Countdown to Black Friday ~ Day 8 ~ Goodshop & GoodSearch

GoodShop is an on-line third party retailer, similar to iGive, which sends a portion of the total purchase cost made through their links along to the NNPDF ~ but they also have some FUN additions that set them apart! 

GoodShop offers the added bonus of coupons, as well as, access to travel and hotel web sites ~ all which then send a percentage of your total purchase on the foundation. 

Planning to travel for the Holidays or New Years? Expedia, Travelocity, Priceline and Hotels.com all give a percentage of your purchase to benefit Niemann-Pick Disease! 

Visit the Newsline to view the whole posting!

We hope our families and friends have a safe, warm and happy holiday this week and thank you for all you do for the NNPDF Community. Our warmest wishes to you and yours!

Shopping Countdown to Black Friday ~ Day 7 ~ Persevere for Life Bead

Charm bracelets & necklaces have increased in popularity over the last few years, thanks in great part to the multitude of beads made available to represent an individual and mark memorable occasions which allows the final piece of jewelry to be unique to its wearer. Now you can add Niemann-Pick Disease Awareness to your, or a loved one’s, collection of charm/beads! 

Thanks to the creativity of NNPDF Board Member, Becky McGuire, who drew inspiration from her cousin, Kelly Thompson (NPC), the NNPDF is pleased to announce that a Pandora-like glass bead is NOW AVAILABLE! The bead is compatible with Pandora, Chamilia, Biagi, Troll and most European bracelets. 

Visit the Newsline for the full post!

____________________________________________________________

Check in tomorrow for our LAST countdown to Black Friday post! Wednesday we will take a closer look at the Goodshop & Goodsearch! In the meantime, feel free to visit the updated NNPDF Store, or view the most recent e-Newsletter for more shopping ideas!

Update on iGive.com ~ Earn $5.00 for the NNPDF!

If you register with iGive before Cyber Monday (December 2nd, 2013), iGive will give the NNPDF an extra $5 for every new member that tries the iGive Button, even if you don't end up shopping!

Click the link below to get started and help generate $5.00 for the Foundation!!

http://iGive.com/welcome/warmwelcome.cfm?c=62966

Shopping Countdown to Black Friday ~ Day 6 ~ Bravelets™

Bravelets™ is a non-profit organization that gives people the ability to create jewelry to raise awareness for the cause that touches their lives. Now, thanks to support from NNPDF Board Member, Becky McGuire, cousin of Kelly Thompson (NPC), the NNPDF have their own line of Bravelets “Periwinkle” jewelry.

This beautiful jewelry will not only delight anyone who receives this gift, but it is also an eye catching way to open and build a discussion about Niemann-Pick Disease awareness.

For every piece of jewelry sold, $10 will be donation to fight Niemann-Pick Disease! 

~*Use the Code mcguire079 to get 10% off your order!*~

Visit the Newsline to view the full post!

Bravelets™ are made to help you be brave during tough times. Wear it proudly for yourself or for a loved one!

____________________________________________________________

Stay tuned for Tuesday's post as we take a closer look at the Persevere for Life “Pandora-like” bead.   In the meantime, feel free to visit the updated NNPDF Store, or view the most recent e-Newsletter for more shopping ideas! 

Shopping Countdown to Black Friday ~ Day 5 ~ AmazonSmile!

Shopping Countdown to Black Friday 

~ Day 5 ~ 

AmazonSmile!

Amazon is one of the largest and most well-known store sites for online shopping. You can find almost anything there, which is why so many people use it when it comes time to purchase gifts for loved ones & items for themselves, especially during the holiday season. Why not further the benefits by ensuring that your online holiday shopping will result in a donation to the NNPDF as well? 

AmazonSmile is a simple and automatic way for you to support the NNPDF every time you shop online, at no cost to you. 

When you shop at www.smile.amazon.com after registering, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate 0.5% of the purchase price to the NNPDF!

Visit the Newsline for the full post on how easy it is to sign up and get started!

We'll give you a break over this weekend to get some shopping in, but stay tuned for Monday's post as we detail the benefits of the beautiful Bravelets™ Jewelry. 

______________________________________________________________________

From Monday, November 18th through Wednesday, November 27th, the NNPDF will be highlighting one Holiday Gift Giving option a day leading up to "Black Friday" ~ November 29th ~ to show how easy it is to find the perfect online gift for a loved one while benefiting the NNPDF! 

Please pass along these links and ideas to your extended friends and family a-like and check back daily for new ways in which you can help give the gift of hope this holiday season! 

Shopping Countdown to Black Friday ~ Day 4 ~ Wristbands

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

Recently updated with "Persevere for Life" engraved along the band, these periwinkle wristbands are so versatile they can be used all year round.

Visit the Newsline for the full post.

Stay tuned for Friday's post as we take a closer look at how shopping onAmazon.com can benefit the NNPDF! In the meantime, feel free to visit the updatedNNPDF Store, or view the most recent e-Newsletter for more shopping ideas!

--------------------------------------------------------------------------------

From Monday, November 18th through Wednesday, November 27th, the NNPDF will be highlighting one Holiday Gift Giving option a day leading up to "Black Friday" ~ November 29th ~ to show how easy it is to find the perfect online gift for a loved one while benefiting the NNPDF! 

Please pass along these links and ideas to your extended friends and family a-like and check back daily for new ways in which you can help give the gift of hope this holiday season! 

Shopping Countdown to Black Friday ~ Day 3 ~ Willow Wicks!

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. A Whopping 40% of the total sale cost for these items will be donated directly back to the NNPDF! Wow ~ what a GREAT way to give a wonderful gift and support the NNPDF to boot! 

Just in time to help with your holiday gift giving, Lisa has created a NEW “PERSEVERE for Life” line of hand-crafted products including both candles and lotion! For those who have had the opportunity to attend the NNPDF annual family conferences and are welcomed into the large conference session rooms by the warm, beautiful scent of the memorial candles ~ these candles are made with the same comforting warm aroma ~ Butterfly Kisses.

Visit the Newsline for more information

~ From Monday, November 18th through Wednesday, November 27th, the NNPDF will be highlighting one Holiday Gift Giving option a day leading up to "Black Friday" ~ November 29th ~ to show how easy it is to find the perfect online gift for a loved one while benefiting the NNPDF! 

Please pass along these links and ideas to your extended friends and family a-like and check back daily for new ways in which you can help give the gift of hope this holiday season! 

Stay tuned for Thursday's post ~ it will prove to be a REAL STOCKING STUFFER ~ as we take a closer look at the Persevere Wristbands.

Day 2 ~ PersevereWEAR

There are many ways to raise awareness, but with PersevereWEAR you can make a statement to the world and open up a dialogue to share information about Niemann-Pick Disease simply by wearing it!

“Persevere” and PersevereWEAR, originally designed and promoted by Lorna Tyrrell in support of her sweet baby girl, Naomi (NPC), has grown to become the battle cry for all the families of the NNPDF. Over the years, “PersevereWEAR” clothing items have developed into a staple for fundraisers and families alike. Not only is the wearer able to show their unending support of their loved one diagnosed with NPD but they also help raise awareness into NPD and “PersevereWEAR” is an easy “and stylish” way to raise funds in support of NNPDF service programs and urgently needed research.

Visit the Newsline to view the full post!

From Monday, November 18th through Wednesday, November 27th, the NNPDF will be highlighting one Holiday Gift Giving option a day leading up to "Black Friday" ~ November 29th ~ to show how easy it is to find the perfect online gift for a loved one while benefitting the NNPDF! 

Please pass along these links and ideas to your extended friends and family a-like and check back daily for new ways in which you can help give the gift of hope this holiday season! 

e-Newsletter ~ Shopping to Benefit the NNPDF!

Holiday Online Shopping to Benefit the NNPDF ~ just in the "nic" of time!

The NNPDF has issued a "Black Friday" Holiday Online Shopping E-newsletter chock full of shopping gift giving ideas to assist you in finding the PERFECT item for all the loved ones on your Holiday "Gift" list! 

Even better ~ share this link with all of your family and friends! Every gift item and suggestion noted in the E-newsletter below ~ will directly benefit programs sponsored by the NNPDF ~ research and family services assistance.

Click Here to view the e-Newsletter!

What better way to ensure that your NAME appears on the "NICE" list this holiday season?  

Holiday greetings and best wishes to all, 

~Nadine

Day 1 ~ Online Shopping to Benefit the NNPDF!

Beginning today, Monday, November 18th through Wednesday, November 27th, the NNPDF will be highlighting one Holiday Gift Giving option a day leading up to "Black Friday" ~ November 29th ~ to show how easy it is to find the perfect online gift for a loved one while benefiting the NNPDF!

Please pass along these links and ideas to your extended friends and family a-like and check back daily for new ways in which you can help give the gift of hope this holiday season! 

~*~

As we kick off the start of our Black Friday countdown, we wanted to start with something that can speak to everyone.  From the hard core, to the casual online shopper, iGive.com is perfect for all types!

So what is iGive and how can it be used to benefit the NNPDF?  In more ways than you think!

Visit the Newsline to find out more!

We'll catch you tomorrow when we talk about the new PersevereWEAR line! In the mean time, feel free to visit the updated NNPDF Store, or view the most recent e-Newsletter for more shopping ideas!

Wall Street Journal - Trials: A Desperate Fight to Save Kids & Change Science

“Trials ~ A Desperate Fight to Save Kids & Change Science”

By Amy Dockser Marcus ~ Staff writer for the Wall Street Journal

Dateline: November 14, 2013

For six years, The Wall Street Journal followed a group of parents and scientists seeking a treatment for a rare and fatal genetic disease that strikes primarily children. Their collaboration accelerated development of a promising drug and, along the way, pushed the boundaries of medical research itself.

Follow this link to learn more about the story associated with Niemann-Pick Disease Type C here: 

Trials: A Desperate Fight to Save Kids & Change Science 

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 a clinical trial. 

A sincere note of thanks and appreciation goes out to this articles author, Amy Dockser Marcus, of The Wall Street Journal and her team of photographers, Evan Simon and Melissa Golden, for her unending devotion, dedication and perseverance, not only to the written word on the page which portrays the desperation and heartbreak that our Niemann-Pick Disease Families face at the diagnosis of their loved one, but to know how genuinely Ms. Marcus connected with the children and families she had the opportunity to work with. She gathered them close, held them in her heart and helped them to build treasured memories. For that, we are especially indebted.

Last, but certainly not least, are the sweet children and young adults diagnosed with Niemann-Pick Disease, whose families took the courageous step to move outside of their “safe-harbor” comfort zones and moved into the wider community and news media to share their families tragic diagnosis, knowledge, experience and personal sorrow. All of our Niemann-Pick Disease families will be forever grateful to those who braved sharing their heartbreak and personal circumstances for the wider NPD community.

We WILL one day, all stand together, hand-in-hand, and declare that we have Persevered in Our Quest for A Cure!

~ National Niemann-Pick Disease Foundation 

Experimental Therapies - Resources on Clinical Trials

Dear NNPDF Families and Friends,

As many families within the NNPDF membership are currently involved in clinical trials for both disease types: (ie:  Niemann-Pick Disease Type C = NIH/TRND NPC Cyclodextrin & Niemann-Pick Disease Type B = Acid Sphingomyelinase Deficiency (ASMD) Enzyme Replacement Therapy at Mt. Sinai) and both trials are continuing to recruit/search out more participants for both, the NNPDF Central Office has updated the “Thinking About Experimental Therapies” page on the NNPDF web site to include two new links:

• "NIH Clinical Research Trials and You" - The National Institutes of Health, which is holding the Cyclodextrin trial, recently developed and rolled out a new web resource site for those considering participation in a clinical trial.

• "Learn About Clinical Studies" - This covers basic questions about clinical trials.  What is a clinical trial?  How long do they last? It also covers questions pertaining to participation as well.

• “Thinking About Experimental Therapies” – This is a document developed by the NNPDF as a resource for those considering participation in a trial………it provides a litany of questions that you should ask/understand prior to taking part in a clinical trial.

Visit the NNPDF “Experimental Therapies” Web page for access to these new links as well as other resources.  

Genzyme (A Sanofi Company) Video

Hello NNPDF Families and Friends,

The link below will allow you access and view a YouTube video developed by Genzyme Pharmaceuticals (A Sanofi Company), on how the scientists and researchers at Genzyme develop and produce therapeutic medications for rare diseases. The process is simply as fascinating as it is hard to believe. This information is very timely, especially as both our our NPD communities, Niemann-Pick Disease Type C and NPD Type A&B (ASMD), are both involved in clinical trials at the moment. I hope that you find this of interest.

Nadine Hill; NNPDF Executive Director

"By inserting into living mammalian cells a human gene that directs the production of a particular enzyme, we essentially turn those cells into tiny "factories" that produce the enzyme, which can then be harvested and purified for medical use in humans."

Update from Orphazyme ~ 10/31/2013

Dear Families and Friends,

The NNPDF Central Office received an update pertaining to the current research and clinical trial work as it relates to Orphazyme and their proposed clinical trial titled: Orph001 (rhHSP70).

Dear Reader,

We would like to update you about the progress of the Orph001 clinical development programme.

With the aim of reaching the highest achievable quality in standards and procedures certain amendments have been introduced into the Orph001 development programme to ensure full dose definition, and high alignment to regulatory recommendations and requirements in Europe and US.

Please, let us give you a short review of our development program and the steps ahead.

Visit The Latest Research web page for the full Press Release.

October Awareness Month ~ Day 31~ INPDA!

 

~October 31st, 2013~
The International Niemann-Pick Disease Alliance

Dear Families and Friends,

On the 31st day of our October NPD Awareness month events, we are highlighting the work of the International Niemann-Pick Disease Alliance (INPDA) based out of the United Kingdom.

As we wrap up October Niemann-Pick Disease Awareness Month, we would like to take the time to remind our community that Niemann-Pick Disease is a global disease, that affects people 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 that reach out and contact us, there are times where distance and language do become a barrier in supporting NPD family needs.  For this, we are very grateful to have the International Niemann-Pick Disease Alliance, which helps us to bridge such gaps. The INPDA states that the group is an, "International response to a group of diseases that present challenges that cross all national boundries." 



INPDA Members during the 2013 Family Support and Medical Conference 

The International Niemann-Pick Disease Alliance was formed in October, 2009 with a view of providing a forum, where, through the exchange of information, experience and knowledge, progress could be accelerated. 

In 2013 a grant was granted to the INPDA in support of creating the FIRST Niemann-Pick Disease International Registry database, which will help provide with accurate numbers of those affected with NPD around the world, as well as allowing us to support a wider spectrum of families.

To learn more about the International Niemann-Pick Disease Alliance (INPDA): Click Here

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Every day in the month of October we will be sharing fundraising ideas and highlight special events to keep the momentum going.  The NNPDF is here to help and support you in these events ~ see all that the NNPDF has available to assist you here.  So keep an eye on this web site and the Facebook Awareness Event page for the latest updates. 

Remember that any events you are hosting for October can be sent to the NNPDF Central Office to be shared with the NPD Community.  Contact: bgreen@nnpdf.org .

Well NPD families and friends far and wide, we made it through another ~ "October as Niemann-Pick Disease Awareness Month"! It is exciting to note that during October 2013 we had higher levels of family enthusiasm and involvement from our NPD membership communities than we have ever had in the past.  For this we are so very appreciative and grateful! 

Thanks for being so tolerant of our daily updates and highlights ~ but ~ our goal was to reach out and share additional information about the work and goals of the foundation all in support of YOU ~ our NPD family membership!

Once again, our appreciation runs deep as we continue to Persist in our Quest for a Cure! 

Nadine

[Oct 31st, 2013~nmh]