Tuesday, March 31, 2015

March 31st, 2015 ~ Update from the NNPDF Board of Director's

Dear NNPDF Families and Friends,

Last week the NNPDF Board of Director’s rolled out a new website page designed specifically for Board related updates which will provide a NEW way for your Board Representatives to communicate with you, our family membership and key stakeholder’s.

As we shared with you last week, the NNPDF Board of Director’s wrapped up our annual board meeting earlier this month in Chicago, Illinois.  Last week Tuesday, March 24th, 2015, the first post came from the 2015 NNPDF Board Chair, Leslie Hughes, who resides in Wichita Falls, Texas and serves on the foundation board in memory of her great-niece, Riley Corbitt.

Click here to read Leslie's March 24th Update: http://www.nnpdf.org/aboutus_02.html#ExecCommittee

Today, we wish to share with you an update from the 2015 Nominations Committee Chair, Lisa Chavez, of Farmington, New Mexico, who serves on the foundation board in memory of her daughter, Breann.

To access the NEW web page titled:  “Message from the NNPDF Board” ~ simply go to the NNPDF Web Site Home Page at www.nnpdf.org for the most recent update to the NNPDF membership; dated:  March 31st, 2015.  

Once on the NNPDF Home Page ~ simply follow the "Quick Link" on the NNPDF Home Page titled:  From the NNPDF Board of Directors // NEW ~ Dateline: March 31st, 2015!

Friday, March 27, 2015

Ashlyn P. Purpura - 04/19/2008 ~ 03/25/2015


Dear NNPDF Families and Friends,

It is with heavy hearts that the NNPDF Central Office shares word from the home of Kelly and Neil Purpura, that cherished daughter, Ashlyn P. Purpura, lost her battle with Niemann-Pick Disease type C at the tender age of 6 years. 

In addition to her parents, Ashlyn is survived by her little sister, Arieanna. Ashlyn is described by those who loved her as loving to play and make friends with everyone in her class, she was especially fond of everything pink and purple, and her favorite pastime was listening to music and story time.

Kelly, Ashlyn's mother, shared this over Facebook:

"I want to personally Thank All of you for the condolences they really mean a lot to us. We are incredibly grateful for all the love and support from the community for our entire family...(A Request from us…..) Everyone is encouraged to wear bright colors on Sunday. She, Ashlyn, would love to see all the pretty colors. Her favorites are purple and pink but bright if you don't have either. Thanks again"

The family has generously directed that memorial donations in Ashlyn's name be sent to the NNPDF. You can read Ashlyn's service information and send personal condolences to the family by visiting the NNPDF Newsline web page with the link: http://www.nnpdf.org/Newsline2015.html#Ashlyn

To the Purpura family and all those who held Ashyln dear, please know that we send our deepest and heartfelt sympathies to you and all those whose lives were touched by your sweet  Ashlyn. There are bound to be difficult and trying times ahead, but please know that we, as well as, your extended NPD family community will all be here to give you strength in the coming days, weeks and months ahead.  May the love and support of all those who loved Ashlyn provide you comfort at this time. 

Thursday, March 26, 2015

Requests For Application ~ NNPDF 2015 Research Fellowships Open

Dear NNPDF Families and Friends,

The National Niemann-Pick Disease Foundation invites applications for research fellowships examining the biology of Niemann-Pick Type C (NPC) disease, a lethal neurodegenerative disease for which there are no effective therapies. 

Those eligible to apply for funding are:

· Predoctoral students with a lab selected and an approved thesis
· M.D., Ph.D and D.V.M postdoctoral researchers
· Early career investigators 

Preference will be given to research projects developing new therapies for NPC, and translational research projects that improve our understanding of the biology, pathogenesis and potential treatment of NPC disease.

For additional information, please visit the NNPDF Research Funding Strategy web page: http://www.nnpdf.org/npresearch_01.html

Wednesday, March 25, 2015

Tristan Lindsey - 04/09/2002 ~ 03/25/2015


Dear NNPDF Families and Friends,

The NNPDF Central Office received the heartbreaking news today that precious Tristan Lindsey, beloved daughter of Tracy & Derrick Lindsey, lost her battle with Niemann-Pick Disease type C on March 25th, 2015 at the tender age of 12 years.  
In remembrance of her daughter, Tracy lovingly wrote: 

"It is with a peaceful heart that I share our daughter Tristan peacefully returned home to our Father in Heaven. She was such a blessing to our family and everyone who knew her. Her beautiful smile and eyes that could say a million words with out her ever speaking, will forever be missed. I know she's running, playing and eating everything in sight. Thank you everyone for loving our baby and loving us as well. 

~ Love the Lindsey Family" 

May the family and friends of sweet Tristan find the strength they need to move on in the days, weeks and months ahead. Please know that all the families and friends of the National Niemann-Pick Disease Foundation are with you all in our hearts and in grief. Please know if you should you need us, we are here always with open arms.

NNPDF News: Vtesse, Inc. Forms Scientific Advisory Board

Dear NNPDF Families and Friends,

We are pleased to share with the foundation's Niemann-Pick Disease type C (NPC) families and community a press release regarding the recently incorporated, Vtesse, a rare disease company spun-off from Cydan Development, Inc. 

Vtesse announced today the formation of its Scientific Advisory Board (SAB), to include Niemann-Pick Disease experts Drs. Paul Gissen, Marc Patterson and Forbes D. Porter (who both are currently are on the NNPDF's International SAB), along with biopharmaceutical industry leader Dr. Cristina Csimma, to join Vtesse in their quest to develop new treatments for people facing Niemann-Pick Disease Type C and rare diseases. 

Visit the Cyclodextrin page for the full press release: http://www.nnpdf.org/Cyclodextrin.html#VtesseMar25th

Message from the NNPDF Board of Director's

Dear NNPDF Families and Friends,
“The NNPDF Board of Director’s has just completed our annual meeting and wish to provide the entire NPD community with an update. Through this link you will find a new page on the website designed specifically for Board related updates. First up, a message from the 2015 NNPDF Board Chair, Leslie Hughes.”
Please follow this NEW web link to the NNPDF Web Site Home Page (www.nnpdf.org ) for an update to the NNPDF membership from the Foundation Board Chair, Leslie Hughes. (Simply follow the "Quick Link" on the NNPDF Home Page titled: From the NNPDF Board of Directors. )
Dateline: March 24th, 2015

Tuesday, March 17, 2015

NNPDF March 2015 e-Newsletter

Dear NNPDF Families and Friends,

The NNPDF March 2015 e-Newsletter is available! Highlights include:

- 23rd Annual NNPDF Family Support and Medical Conference ~ Dates & Hotel Location 
- Coach Matt Painter wins $100,000 for NPC Research 
- World Rare Disease Day 2015 
- Vote Jim Green ~ INPDA ~ United Kingdom Volunteer of the Year 
- 2015 NNPDF Annual Board Meeting 

Click the link to view the NNPDF March 2015 e-Newsletter: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1287079

Monday, March 16, 2015

$100,000 Won for NPC Research ~ Thank You!!

This is amazing!!! Thank you to everyone who participated in the Coaches' Charity Challenge!  Because of your continued efforts of voting everyday, the Smith Family BReaKthru Fund & the Ara Parseghian Medical Research Foundation  just won the $100,000 grand prize for NPC Research!!!

Saturday, March 14, 2015

Community Action Needed! 1 Day to $100,000 for NPC Research!

Coach Painter is still in first!  Don't forget to vote and share through tomorrow!  Let's see Coach Painter to the Championship and $100,000 in NPC Research!

Friday, March 13, 2015

ALERT: 2 Days to $100,000 for NPC Research

Matt Painter is in first place thanks to all your diligence in voting and raising awareness!  Let's not let this momentum stop now with 2 days left to win $100,000 for NPC research!  Remember to vote and share!

Thursday, March 12, 2015

Vote Today. Vote Every for $100,000 for NPC Research!

Coach Painter is in first place!  Keep the votes coming and make $100,000 for NPC research a reality!  We're so close now!

Wednesday, March 11, 2015

ALERT: 4 Days to $100,000 for NPC Research!

Coach Painter is tied at 46% with the other Coach!  There is 4 days left for voting, so let's keep encouraging family & friends to vote every day through the 15th!  http://www.votemattpainter.com

Phase 2/3 Adult and Phase 1/2 Pediatric Clinical Trial Update

Dear NNPDF Families and Friends,

Representatives of the National Niemann-Pick Disease Foundation (NNPDF), Niemann-Pick UK and the International Niemann-Pick Disease Alliance (INPDA) today participated in a teleconference with Genzyme, A Sanofi Company.

We were pleased to learn that plans for the Phase 2/3 Adult and Phase 1/2 Pediatric Clinical trial of rhASM for ASMD Niemann-Pick disease continue to progress. Discussions continue with the regulatory authorities, including the FDA and the EMA and we expect Genzyme to release a more detailed community update soon.

Please contact the NNPDF Central Offices should you have any questions at: nnpdf@nnpdf.org

Tuesday, March 10, 2015

5 Days and Counting to $100,000 for NPC Research!

Remember to keep voting through March 15th!  Coach Painter has been tied or in second the last few days, so let's push him through to the top spot!

Monday, March 9, 2015

Have You Voted Today? $100,000 for NPC Research

Coach Painter is catching up with the Coach who is currently in in first place.  They are almost neck and neck with 6 days left to go for voting! Have you voted today? www.votemattpainter.com

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Sunday, March 8, 2015

Vote Today, Vote Daily ~ $100,000 for NPC Research

Matt is currently in 2nd place! Don't forget to vote today and every day till the 15th!

Friday, March 6, 2015

Thursday, March 5, 2015

Coach Matt Painter Competes for Local Charity ~ $100,000 for NPC Research


Dear NNPDF Families and Friends,

The Smith family sent us a video highlighting the efforts of Coach Matt Painter from Purdue University and the Smith Family BReaK-Thru Fund in their quest to win $100,000 for NPC research!

We're 10 days away now and the overall efforts of our collective NPD community has been absolutely amazing!  Coach Painter is in first place!

Remember to vote daily and share within your own personal circles.  Let's keep this momentum going and see the Smith Family BReaK-thru Fund & Coach Matt Painter to the Championship position! 

 Vote Today ~ Vote Everyday!

Wednesday, March 4, 2015

$100,000 for NPC Research ~ Just 11 Clicks Away ~ Vote Coach Matt Painter ~ FINAL ROUND


Dear NNPDF Families and Friends,

The entire Niemann-Pick Disease type C community has been offered an unparalleled opportunity to raise $100,000 towards NPC research, but it will only happen if YOU take action and encourage others to do the same. It's easy! Vote everyday online between now and March 15th to push the Trent and Julie Smith Family Foundation "BReaK Thru Fund" for NPC research to the finish line and the top prize of $100,000! (Three of the Smith family children have been diagnosed with Niemann-Pick Disease type C ~ Braden, Riley and Keaton ~ thus BReaK-Thru Fund.)

The FINAL round of voting opened on March 2nd, 2015 and continues through March 15th when 1 Coach out of the final 4 will claim the $100,000 grand prize!

Matt is currently neck to neck with another Coach and we want to make sure he is announced as Champion on March 15th!

Vote daily, share this with your families, share this with your friends and encourage them to do the same. 

Alone we are rare, but together we are strong! 

Monday, March 2, 2015

NPC In the News ~ The Wall Street Journal and BBC News

Dear NNPDF Families and Friends,

The NNPDF Central Office was recently notified of three articles "In the News", which address ongoing therapies and family efforts to care for their children for Niemann-Pick Disease type C. The first two articles are highlighted in the Wall Street Journal, the third in the United Kingdom via the BBC.

- "Deaf or Death? In Drug Trial, Parents Weigh Life vs. Hearing Loss"
- "Others Hit Unexpected Obstacles in NPC Survival Fight"
- "Our Bid to Raise Awareness of Our Son's Disease"

Visit the NNPDF Newsline to view the articles: http://www.nnpdf.org/Newsline2015.html#WSJBBC