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

---

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]

October Awareness Month ~ Day 30 ~ NPD Clinical Trials - Recent Updates

~October 30th, 2013~

NPD Clinical Trials ~ Recent Updates 

Dear Families and Friends,

On the 30th day of our October NPD Awareness month event highlights, we are turning the spotlight to the recent updates which the NNPDF has received pertaining to the status of the two ongoing clinical trials into treatment options for both NPD Type C and NPD Type B (ASMD). 

A clinical trial study for NPD Type C patients in the use of Cyclodextrin (2-hydroxypropyl-β-cyclodextrin) is being conducted at the National Institutes of Health (NIH) and Genzyme, (a Sanofi Company), is sponsoring a clinicla trail at Mount Sinai School of Medicine for NPB (ASMD).

Visit the Newsline for the full post!

Every day in the month of October we will be sharing fundraising ideas and highlight special events to help families keep the momentum going. The NNPDF is here to help and support you with these events. So keep an eye on the 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 entire NPD Community. Contact: bgreen@nnpdf.org .

The countdown is almost OVER ~ ONE day to go!

October Awareness Month ~ Day 29 ~ Meet the SAB - Day 4!

~October 29th, 2013~

Meet the International Scientific Advisory Board

Dear Families and Friends,

On the 29th day of our October NPD Awareness month events, we are continuing to introduce our NNPDF International Scientific Advisory Board and recognizing their hard work on behalf of all families touched by NPD.

All members of our esteemed Scientific Advisory Board and Board Of Directors contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our SAB.

Visit the Newsline to view the full post

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 the 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.

See you tomorrow!

October Awareness Month ~ Day 28 ~ Meet the SAB - Day 3!

~October 28th, 2013~
Meet the International Scientific Advisory Board

Dear Families and Friends, 

On the 28th day of our October NPD Awareness month events, we continuing to introduce our NNPDF International Scientific Advisory Board and recognizing their hard work on behalf of all families touched by NPD.

All members of our esteemed Scientific Advisory Board and Board Of Directors contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our SAB.  

Visit the Newsline to see the full post!

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. 

See you tomorrow! 

October Awareness Month ~ Day 27 ~ Meet the SAB - Day 2!

~October 27th, 2013~
Meet the International Scientific Advisory Board

Dear Families and Friends, 

On the 27th day of our October NPD Awareness month events, we continuing to introduce our NNPDF International Scientific Advisory Board and recognizing their hard work on behalf of all families touched by NPD.

All members of our esteemed Scientific Advisory Board and Board Of Directors contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our SAB.  

Visit the Newsline to see the full post!

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. 

See you tomorrow! 

October Awareness Month ~ Day 26 ~ Meet the SAB!

~October 26th, 2013~
Meet the International Scientific Advisory Board

Dear Families and Friends, 

On the 26th day of our October NPD Awareness month events, we are introducing our NNPDF International Scientific Advisory Board and recognizing their hard work on behalf of all families touched by NPD.

All members of our esteemed Scientific Advisory Board and Board Of Directors contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our SAB.  

Visit the Newsline to see the full post!

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. 

See you tomorrow! 

October Awareness Month ~ Day 25 ~ 940-WFAW Radio Interview

~October 25th, 2013~

October Awareness Events ~ NNPDF 940-WFAW Radio Interview 

Dear Families & Friends,

On the 25th day of our October NPD Awareness month events, we are focusing our daily highlight on an audio link to a local Fort Atkinson, Wisconsin (home of the NNPDF Central Office) radio interview with past NNPDF Board Chair, Barb Vorpahl, and NNPDF Executive Director, Nadine Hill in recognition of October as NPD Awareness month. 

Visit the Newsline for the full post!

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. 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 .

See you tomorrow! 

Update from Genzyme on Acid Sphingomyelinase Deficiency (ASMD) Development Efforts

Dear Friends and Families,

Genzyme, a Sanofi company, is pleased to update the Niemann-Pick disease patient community on the progress of efforts to develop a potential therapy for acid sphingomyelinase deficiency (ASMD, also known as Niemann-Pick disease Types A and B).

Visit the Enzyme Replacement Therapy Page for the full Press Release.

October Awareness Month ~ Day 24 ~ Meet the NNPDF Board of Directors ~ Day 4!

~October 24th, 2013~

Meet the NNPDF Board of Directors 

~Day 4~ 

Dear Families and Friends,

On the 24th day of our October NPD Awareness month events,we are continuing to introduce our NNPDF Board of Directors and recognize their long journey of courage, kindness and compassion on behalf of all NPD diagnosed patients and their families. 

All members of our Board Of Directors and our esteemed Scientific Advisory Board contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our 2013 Board of Directors. 

Visit the Newsline for the full post!

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. 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.

October Awareness Month ~ Day 23 ~ Meet the Board, Day 3!

~October 23rd, 2013~

Meet the NNPDF Board of Directors~Day 3~ 

Dear Families and Friends,

On the 23rd day of our October NPD Awareness month events, we are continuing to introduce our NNPDF Board of Directors and recognize their long journey of courage, kindness and compassion on behalf of all NPD diagnosed patients and their families. 

All members of our Board Of Directors and our esteemed Scientific Advisory Board contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our 2013 Board of Directors. 

Visit the Newsline for the full post!

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. 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 .

See you tomorrow! 

Cyclodextrin Update!

Dear Families and Friends,

The NNPDF Central Office received the below message from the NIH/TRND Team today which we are pleased to share with the NNPDF Community.

We are happy to share with the NPD community that the NIH/TRND Cyclodextrin in NPC1 trial has been restarted. Despite the Federal Government shutdown from October 1-16, our team was able to meet our projected re-start date in late September, and to date have coordinated three successful admissions on this protocol. We are grateful for the patience of the participating families, and for the dedication of the NIH Clinical Center staff, which allowed us to avoid any major interruptions in the admission schedule.

We have scheduled three additional patients to start before the end of 2013. The remaining open slots will continue to be scheduled on a rolling basis as we get closer to the start dates in early 2014. We will be re-contacting families who had been screened previously to make sure they are still eligible before we schedule the remaining slots. If any families with children ages 2-25 are interested in more information about the trial or would like a member of our team to screen their child to see if they are eligible, they can contact Nicole (Yanjanin) Farhat at (301) 594-1765 or email nicole.farhat@nih.gov.

To read the FULL letter, with eligibility criteria for the trial, visit the Cyclodextrin page

October Awareness Month ~ Day 22 ~ Meet the Board, Day 2!

~October 22nd, 2013~ 

Meet the NNPDF Board of Directors  ~ Day 2!

On our 22nd day of our October NPD Awareness Month events, we are continuing to introduce our NNPDF Board of Directors and recognize their long journey of courage, kindness and compassion on behalf of all NPD diagnosed patients and their families.

All members of our Board of Directors and our esteemed Scientific Advisory Board contribute their time and expertise to the foundation without compensation. This week, we will be highlighting members of our 2013 Board of Directors.

Visit the Newsline to view the full post!

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. 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 .

See you tomorrow! 

October Awareness Month ~ Day 21 ~ Meet the Board!

~October 21st, 2013~

Meet the NNPDF Board of Directors!

On the 21st day of our October NPD Awareness month events, we are shining our spot light on the National Niemann-Pick Disease Foundation's Board of Directors and their long journey of courage, kindness and compassion on behalf of all NPD diagnosed patients and their families. 

Visit the Newsline for the full post!

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.  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 .

See you tomorrow! 

Jerry James Wilson - 12/13/1989 ~ 10/18/2013

Dear Families and Friends,

It is with great sorrow that we must inform the Niemann-Pick Disease Community that Jerry Wilson lost his battle with NPD on Friday, October 18th at the age of 23.

Jerry enjoyed listening to music, fishing, playing video games, and riding his bike. He was a big fan of Pittsburgh Steelers football and the World Wrestling Federation. John Cena was his favorite professional wrestler. Jerry also loved playing with remote control cars, drawing, going bowling and playing bingo. 

Many of us had the esteemed honor of meeting Jerry at the 2011 Family Conference. He especially enjoyed the baseball game and the fireworks display. Feel free to share your fond memories & condolences with the family at the below link. 

Visit the Newsline for links for Jerry's service, memorial and to send condolences to the family.

Our hearts go out to all of Jerry's family and anyone who he has touched in his time with us. May his family and friends find the strength they need to move on in the days, weeks and months ahead without Jerry in their arms. 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. 

October Awareness Month ~ Day 20 ~ Getting Media Coverage

~October 20th, 2013~

Sample Press Release & History of the National Niemann-Pick Disease Foundation

Dear Families & Friends,

On the 20th day of our October NPD Awareness month events, we are providing a sample of a editable Press release that can be used for fundraisers. We're also taking a look back at the history of the NNPDF.

Visit the Newsline to see the full post!

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. 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.

October Awareness Month ~ Day 19 ~ Fundraising Support

~October 19th, 2013~
October NPD Awareness Highlight ~ Fundraising Support

Dear Families & Friends,

On the 19th day of our October NPD Awareness month events, we are taking a look at two different ways the NNPDF helps supportNPD family fundraising and awareness campaign events! If you've never done a fundraiser, or just want more ideas, then read below!

Visit the Newsline for the full post!

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.

October Awareness Month ~ Day 18 ~ Dr. Vite's Research and Ty Quandt's Fundraiser

~October 18th, 2013~

Dr. Vite's Research & Ty Quandt's Fundraiser 

On the 18th day of our October NPD Awareness month event, we are spotlighting Dr. Vite's PowerPoint Presentation from the 2013 Family Conference, as well as Ty Quandt's Grease themed school dance.

Visit the Newsline to view the full post!

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 .

See you tomorrow!

October Awareness Month ~ Day 17 ~ Adult On-set NPD

~October 17th, 2013~

October NPD Awareness Highlight ~ Niemann-Pick Disease Adult On-set

Dear Families and Friends,

On the 17th day of our October NPD Awareness month events, we are turning the spotlight towards three individuals with Adult On-set NPD and on further educational resources in regards to this disease.

Visit the Newsline for the full post!

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. 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 .

See you tomorrow! 

October Awareness Month ~ Day 16 ~ Genzyme & NORD Updates

~October 16th, 2013~

Genzyme Activities for NPD Awareness & NORD's Letter to Congress

Dear Families and Friends, 

On the 16th day of our October NPD Awareness month event, we are spotlighting two NPD Awareness presentations being held today at Genzyme, a Sanofi Company, as well as a letter the National Organization of Rare Diseases (NORD) sent to Congress with reference to the United States Government shut down.

Visit the Newsline to read the full post!

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 availabile 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 .

Check back again tomorrow for more updates and new ideas on how you can continue to be involved in raising Awareness this October for Niemann-Pick Disease! 

October Awareness Month ~ Day 15 ~ e-Newsletter

~October 15th, 2013~

October Awareness e-Newsletter

Dear families and friends,

On the 15th day of our October NPD Awareness month event, we are rolling out our newest e-Newsletter, which focuses on all the ways families and friends can participate in October Awareness Month! 

This newly redesigned e-Newsletter highlights not only NNPDF Awareness items, both classic and new, but provides simple examples of how YOU can participate and make this year's October Awareness Month our most fun and most successful ever!

~Click Here to view the October Awareness Month e-Newsletter~ 

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 availabile 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.

Check back again tomorrow for more updates and new ideas on how to raise Awareness this October for Niemann-Pick Disease! 

October Awareness Month ~ Day 14 ~ ASMD Spotlight

~October 14th, 2013~

Today's Spotlight: Dr. Ledesma's Research & ASMD (Type B) Practical Guide 

On the 14th day of our October NPD Awareness month event, we are spotlighting Dr. Maria Dolores (Lola) Ledesma's research as well as introducing the Practical Guide to Acid Sphingomyelinase Deficiency (ASMD) Niemann-Pick disease Type B".

Visit the NNPDF Newsline to view the full posting!

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 availabile 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 .

Check back again tomorrow for more updates and new ideas on how to raise Awareness this October for Niemann-Pick Disease!

October Awareness Month ~ Day 13 ~ Neurology Now Article

~October 13th, 2013~

Today’s Spotlight: Neurology Now Article and NORD Letter

Dear Friends and Family,

On the 13th day of our October NPD Awareness Month event, we are focusing on a Niemann-Pick Disease related news article referencing NPD and October as NPD Awareness month in the October/November 2013 issues of Neurology Now.

The National Niemann-Pick Disease Foundation was recognized for their efforts to have October declared NPD Awareness Month. The full article itself is a look at disease-related dementias in the Waiting Room titled: Scientists Set Dementia Research Goals. Neurology Now (www.neurologynow.com ) also offered a The Waiting Room "BONUS" segment at which they interviewed Dr. Marc Patterson for detailed information on NPD.

Visit the Newsline for the full article.

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 availabile 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.Looking forward to checking back with you all tomorrow.
~Nadine

October Awareness Month ~ Day 12 ~ Research Spotlight!

~ October 12th, 2013 ~
Research Spotlight: New NNPDF Research Updates

Dear Friends and Family,

On the 12th day of our October NPD Awareness Month event, we shine the spotlight on the research news and research updates from the NNPDF & CC-NNPDF sponsored Post-Doc Fellowships.

The research funded by the NNPDF is made possible in great part due to the efforts of our member families and their extended support networks via local community-sponsored events, and to the support of the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF).

The NNPDF is truly grateful for this support!

Our most recently funded Fellows & Research Grants are:

• Dr. Charles Vite – University of Pennsylvania (Grant)
• Dr. Deepti Gadi – Weill College of Cornell University (Fellowship)
• Dr. Stephanie M. Cologna – National Institute of Health (Fellowship)
• Dr. Lluis Samaranch – University of California (Fellowship)
• Dr. Andrew Munkacsi - Victoria University, New Zealand (Fellowship)
• Dr. Dorthea Maetzel - Whitehead Institute/Cambridge (Fellowship)
  
  To view their current research, labs and biographies: 

Click Here for Fellowship
Click Here for Research Grants 

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 availabile 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. 

Check back tomorrow for more October NNPDF Updates!

October Awareness Month ~ Day 11~ Twitter and Fundraising Spotlight!

~October 11th, 2013~ 

Twitter and Fundraising Spotlight! 

Dear Families and Friends,

As we continue our countdown in October as Niemann-Pick Disease Awareness month, day 11 offers us the opportunity to roll-out the use of a new social media opportunity for our NPD family community ~ TWITTER! In addition to the new NNPDF Twitter account, we are also want to remind our supporters of the existing social media options availalble to our families. Lastly, we wish to highlighting a keen fundraiser event taking place this weekend!

Visit the Newsline to view the full post!

~*~

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 availabile 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.

See you tomorrow!

October Awareness Month ~ Day 10 ~

~October 10th, 2013~

Niemann-Pick Disease Awareness Products

Posters, Brochures, Newsletters & Decals 

Dear Families and Friends, 

On the 10th day of our October NPD Awareness Month event, we are focusing on the informational Awareness products available. 

Whether you are holding a fundraiser or want to provide information for the general public, friends or relatives, the National Niemann-Pick Disease Foundation has a varied supply of informational products to help you raise 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 at their community Awareness campaigns and fundraising events.  So, while brochures, flyers and newsletters are free of charge, we ask a $1.00 donation and discounted postage rate for wristbands and posters to help defray the cost of printing and shipping.   

Visit the Newsline to view the items! 

Additional Awareness Items Opportunities

 

We will be highlighting this further in October, with additional details, but wanted to give a teaser now to get everyone excited! 

Frank from Screen Designs, who is working with the NNPDF to provide PersevereWEAR at a discounted cost, is also offering to create custom shirts for fundraising events at that same discounted price! He will work with you to make sure your shirt is your own from conception to the final printing process. 

Contact Frank at: 410-305-8283 

Cost of custom and regular PersevereWEAR benefits the NNPDF directly. 

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 availabile 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. 

See you tomorrow!

October Awareness Month ~ Day 9 ~

~October 9th, 2013~

Spotlight on: NPD Siblings

My Life with Scott: How Niemann-Pick Changed My Life

Scott Marocco (NPC) & sibling, Lauren Grodin (NNPDF Board Member)

On the 9th day of our October NPD Awareness Month event, we are recognizing an important part of the NPD family unit ~ brothers and sisters! 

Lauren Grodin (Psy.D.), a current member of the  NNPDF Board of Directors, brings a unique perspective to the conversation around NPD Awareness month, as she is a loving NPD sibling as well. Her brother, Scott Marocco, lost his fight with NPC on June 6th, 2000 at the age of 13.  Dr. Lauren Grodin is a licensed psychologist who specializes in working with children, adolescents, and their families. 

She is experienced in providing comprehensive evaluations and treatment interventions to assist youth and their families coping with behavioral and emotional concerns, medical conditions, and learning and developmental disabilities. 

In August 2013, at the 21st Annual Family Conference in Baltimore, MD, Lauren presented a breakout session to our NPD families in attendance detailing how growing up with Scott influenced her life.  Please find links to her PowerPoint presentation, session notes and biography below.

• Life with Scott: How Niemann-Pick Changed My Life
• Presentation Notes
• Lauren Grodin's Biography

~New Facebook Group~

Niemann-Pick Disease Siblings 

 

The National Niemann-Pick Disease Foundation is pleased to announce the development and support of a new Niemann-Pick Facebook networking page for siblings of those who have or had a loved one diagnosed with Niemann-Pick Disease. 

We created this group to encourage Niemann-Pick siblings who have gone through the journey of diagnosis, caring for and living through the loss of a beloved brother or sister to NPD. It is our hope that siblings of any age will join to share experiences for those who are currently living with a family member affected by NPD.

Niemann-Pick Disease Siblings Group on Facebook 

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 availabile 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. 

See you tomorrow!

October Awareness Month ~ Day 8 ~

~October 8th, 2013~

Spotlight on: NPD Sibling Contest

Chase the Cure ~ October Awareness Contest

Cameron Reedy & Chase (NPC) DiGiovanni

On the 8th day of our October NPD Awareness Month event, we are recognizing a family who is hosting an event/contest to help raise Niemann-Pick awareness. 

The DiGiovanni family is holding a contest in honor of Chase DiGiovanni (NPC).

Here are the contest rules:

• Submit a drawing, poem, presentation, report, letter, song, video or any other type of media that talks about Niemann Pick Disease
• You must be the sibling, close friend, cousin or someone who is impacted directly by having an NPD family member.
• Open to kids under 18 for the drawing but anyone can submit
• By submitting your work you promise it is completely your original work and you release all of us (chasethecure.net and the nonprofit you chose to link to) from claims of copyright infringement. Your parents will be signing an email wavier.
• Parents are allowed to help very small children with their projects.
• All Submissions that want to be considered for the drawing must be sent in by 10/25/2013

Everyone who enters has an equal chance of being chosen via the live drawing at the end of the month.  Three winners get a $100.00 Visa Gift card (USD) to be sent via USPS mail or e-mail. 

For more information: Click Here 

To view the detailed instructions: Click Here (PDF) 

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 availabile 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. 

See you tomorrow!