Thursday, December 26, 2013

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. Memorial

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.

Monday, December 23, 2013

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!

Tuesday, December 17, 2013

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!

Monday, December 16, 2013

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.

Friday, December 13, 2013

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. 

Thursday, December 12, 2013

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 

Wednesday, December 11, 2013

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 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

Tuesday, December 10, 2013

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!


Friday, December 6, 2013

Worldwide Candle Lighting ~ Sunday, December 8th, 2013

2013 WCL logo

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

Wednesday, December 4, 2013

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.

For more information on the discussion visit the Newsline

Tuesday, December 3, 2013

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!