October Awareness Month ~ Day 1 ~ How to Get October Declared NPD Awareness Month!

Dear NNPDF Families and Friends, 

It's here! October Awareness Month begins today and with it comes more opportunities than ever before to help spread Awareness!

Every day in the month of October we will sharing fundraising ideas and highlight special events to keep the momentum going. So keep an eye on the web site and Facebook Awareness page for the latest updates. 

Today, you can visit the Newsline to find out how to get October declared Niemann-Pick Disease Awareness month in your state!

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

September 2013 NNPDF e-Newsletter

Dear friends and famillies,

The September 2013 newsletter is now available! 

New highlights and updates on the work of the National Niemann-Pick Disease Foundation (NNPDF) can be found in our latest e-Newsletter ~ just follow the link below to "READ ALL ABOUT IT!"

September 2013 e-Newsletter 

Articles included in this issue: 

• 2013 Baltimore Family Conference Recaps 
• NPD Clinical Trial Updates
• Scientific Advisory Board Highlights
• October Awareness Month ~ 2013 
• NNPDF Spring 2013 Newsletter 

Please contact the NNPDF Central Office at: nnpdf@nnpdf.org if you have any questions! Share this with your family and friends.

~NNPDF Central Office

NNPDF June 2013 e-Newsletter

Dear Families and Friends,

The June 2013 e-Newsletter is now available! Highlights include:

* Updates and information about the 2013 Family Conference
* Fundraiser season has begun!
* 2013 Clinical trials recruiting patients

Visit the Newsline to view it.

21st Annual Family Support and Medical Conference - UPDATE Conference Registration Packet Available - Details on the First-Time Family Fundraising Contest

Dear Friends and Family,

The Family Support and Medical Conference page has now been updated with a digital copy of the 2013 Family Conference Registration packet, with a hard copy version to follow in the mail shortly.

We are also hosting the First Time Family Fundraising contest again this year. If you win, the NNPDF will cover the room cost for the three nights of the conference! So don't wait to make your hotel reservations if you are in the running to avoid disappointment.

For more information, visit the Family Conference page.

Letter from Greg Crawford - Dean of Notre Dame College of Science

Dear NPC friends and families,

Below is a letter from Greg Crawford, the Dean of the College of Science at Notre Dame, asking for your help. Greg is preparing for his annual cross-country bike ride. Funds raised from this event will go to the University of Notre Dame Michael, Marcia and Christa Parseghian fund for NPC research.

Dear NP-C family,


For the past three summers, I have dedicated one month to raising awareness and funds for NPC research through cross-country bike rides – Tucson, Ariz., to Notre Dame, Ind., in 2010; Boston, Mass., to Dallas, Tex., in 2011; Boston to Pebble Beach, Calif., in 2012. The rides have generated nearly 100 articles and media clips that highlight Notre Dame’s research in the fight against NPC and our strong partnership with the Ara Parseghian Medical Research Foundation. This summer, I will embark on another ride for the cause. I will be riding from Los Angeles, Calif., to Baltimore, Md., arriving in time for the National Niemann-Pick Disease Foundation 21st Annual Family Support and Medical Conference. This year’s 3,476 miles will bring my four-summer total to more than 11,000 miles. I will start from Los Angeles around July 1. 

Greg Crawford during 2012 
Road to Discovery ride

Each year, I write a daily blog about the ride. This year, I intend to dedicate a portion of my website to a “Parents’ Corner,” and I am requesting the honor of a contribution from you. Please send me a write-up on your child of up to 300 words – what they love, any stories you’d like to share, your child’s favorite activities (games, hobbies, interests, etc.) and your hopes. I would be happy to include a photograph of your child and/or family if you would like. 

Thank you for considering my request. I am so honored to be riding across America again to raise funds and awareness for NPC. I have met so many wonderful children and families over the years, and it is a real honor to ride for you and your family. 

If you wish to send material for the blog, please direct it to the Notre Dame staff – Gregory_Crawford@nd.edu, nhaley@nd.edu, and Stephanie.Purcell.27@nd.edu – no later than June 15. Please include your formal permission to post your statement and photographs publicly on my Notre Dame blog. 

Thank you again, and I hope to see you in Baltimore! 

Yours in Notre Dame, 

Gregory P. Crawford
Dean, College of Science
University of Notre Dame
Notre Dame, Indiana 

Thanks for your support.

Update from Genzyme on ASMD Development Efforts

Dear families and friends,

Genzyme, a Sanofi company, is continuing its efforts to develop a potential therapy for acid sphingomyelinase deficiency (ASMD, also known as Niemann-Pick disease Types A and B). The potential treatment is the enzyme replacement therapy recombinant human acid sphingomyelinase (rhASM); it is being evaluated for the treatment of the non-neurological manifestations of ASMD.

We have also learned that Genzyme and Mount Sainai are recruiting new patients for phase1b of the Enzyme replacement therapy.

To read the full update, please visit the Enzyme Replacement Therapy - Type B page.

Happy Mother's Day from the NNPDF!

Dear Families and Friends,

As we celebrate this special day on Sunday, Niemann-Pick Disease families know that all Mother’s hold an extra special place in our hearts. Our thoughts and our hearts are with you all this Mother’s day.