October 2008 - National Niemann-Pick Disease Awareness Month

October is the time to raise awareness about Niemann-Pick Disease. We need to get the word out about this rare disease - to doctors, to families, to government leaders, and to the general public.

Activities can be simple or complicated but take some time during October to reach out and tell your story! Below are some tools available from NNPDF to help you.

We invite and encourage each family to look within their family structure, friends and community support networks to create their own team and sponsor an awareness campaign and/or fund raising event during October 2008.

It has been a team effort which has propelled the foundation forward the past sixteen years and it is a team effort that is the key to empowerment against this disease.

Won’t you please join us in our efforts to raise awareness of NPD and to illuminate the vital call for continued funding of urgently needed research into Niemann-Pick Disease?

BE CREATIVE ~ SURPRISE US!

Below are some tools available from the NNPDF Central office to help you. We ask that you notify the foundation office of your events so that we can post them onto the web site. We want to be supportive of you as you prepare for your event, and sharing your team information will serve to inspire other families as well.

• Family and Friends Letter in support of October as NNPDF Awareness Month
• Sample Family & Friends Letter Prototype
• Sample Family & Friends Flyer Prototype
• Family & Friends "Questionairre/Order Form"

Let us do the work for you!

Attached is an example of a Family and Friends prototype letter and flyer that we will help you customize to your unique family situation. Simply complete the family questionnaire, return to the NNPDF office, and we will have the customized letter and information flyers printed and shipped to you. All you need to do is address your envelopes, add postage and mail them out!

• NNPDF Promotional Products for your campaigns. See select items in column at left of link to:
• NNPDF Awareness Items (pdf)

• Request for a Proclamation (sample-pdf)

• Press Release (sample-pdf)

• NNPDF Fund Raising Packet a handy “how to” guide that will walk you through all aspects of hosting a fund raising event for the NNPDF (Contact the NNPDF Central Office ~ we will be happy to help you!)

• Awareness Ad. Created by the Charleston/Orwig advertising agency, this is a powerful statement of why Niemann-Pick research is important to everyone. The ad can be printed for use as awareness flyers. (Please contact the NNPDF Central office for assistance.)
  

• The James Brown public service announcement (PSA). Obtain a 60 second version are on BetaCam SP tapes used by TV stations. (Web versions are low resolution. The tapes are high resolution.)

• Contact the NNPDF Central Office to request a tape or other resources. Email: nnpdf@nnpdf.org

Past Awareness Month Activities

• Governor's Proclamation in Various States
• Friends and family letter campaigns
• Persevere bracelet campaigns
• Casino Night
• Spiritual Convergence
• Family luncheon in celebration of a loved one with NPD
• Yankee Candle fund raiser
• NP Day at the Amusement Park
• Classic car show
• Distribution of bumper stickers and brochures
• Junior Collector's Day for Niemann-Pick Kids, Queens
• Museum of Art.
• Spaghetti dinner fund raiser
• Walk for a Cure
• School poster campaign
• Golf Tournament ~ Silent Auctions & Raffles
• Chamber of Commerce mailing
• Penny Challenges at elementary schools
• Triathlons in support of NNPDF

PERSEVERE AWARENESS
ITEMS/PRODUCTS

New Item ~ NPD PERSEVERE PIN

Help to raise awareness into Niemann-Pick Disease with this colorful gold pin. It is an attractive addition to any lapel, jacket, hat, purse, backpack, etc.

Be creative!

(Scroll down for a link to the pin order form.)

The PERSEVERE Wristband (worn above).
A periwinkle colored bracelet with the word "PERSEVERE" and the NNPDF website address embossed on it (www.nnpfd.org).

The card enclosed with the wristband notes:

"We, the families of the children affected by Niemann-Pick Disease thank you for joining us as we persevere in our quest to find a cure."

Please note: Adult sizes only ~ Children sizes are not available.

Persevere Wristband Oder Form (pdf)

The NNPDF Persevere pin is approximately 1 1/2 " wide by 1" high. (Scroll up for picture.)

Persevere Pin Order Form (pdf)

PERSEVERE CLOTHING

A wonderful selection of quality garments created and supported by the Leon and Lorna Tyrrell family in honor of their daughter, Naomi (NPC ~ age 6)

Persevere Clothing Order Form (pdf)

PERSEVERE WATER BOTTLES

Who isn't without a water bottle in hand? NOW you can help to raise awareness into NPD and be kind to our environment with this handy refillable water bottle.

Persevere Water Bottle Order Form (pdf)

NNPDF & CC-NNPDF PERSEVERE MAGNETS

A large magnet suitable for a vehicle, file cabinet at work, refrigerator, etc. Focus statement:

PERSEVERE

Finding the cure for Niemann-Pick Disease

Persevere Magnet Order Form (pdf)

Additional NPD Awareness Items are availalbe at:

NNPDF Awareness Items