NNPDF 20th Anniversary - 1992 - 2012

NNPDF to Mark 20 Years
of
Helping Families and Advancing Research
in 2012

This year, the National Niemann-Pick Disease Foundation will mark 20 years of providing services to families affected by NPD, and raising awareness and funding for research into the causes and treatment of NPD.

Though we all wish there was no need for an organization dealing with the heartbreaking disease that is Niemann-Pick, the reality is, that until there are effective treatments and a cure, the need is great, and the NNPDF can be proud of all that it has achieved in the fight against NPD.

Twenty years ago, in 1992, families faced NPD on their own, without benefit of a support group.  Barb Vorpahl, one of the founding members and the current NNPDF Board Vice Chair, recalls how, when their daughter, Stacey, was diagnosed with NPC as a toddler, there was one paragraph in one book, and that was all the information she could find, anywhere, about the disease.

Compare that with the information the foundation now makes available to families -- indeed, this Web site alone has grown to be an accurate and in-depth resource for families worldwide, with thousands of "hits" daily.  The foundation also provides publications, newsletters, an annual conference, listserv groups, social media sites, telephone consultations, referrals and more, all to support families in meeting the challenges of NPD.

From the original six families who founded the organization, membership in the NNPDF has grown to 400+ families. Member families benefit from the foundation's programs that help them connect with others who truly know and understand, and from the foundation's work to keep members and all interested parties apprised of the latest in news and research information. 

Families struck by NPD also benefit from the advances made by essential research driven by the foundation and its members' fundraising efforts.  In 20 years, the NNPDF has directed almost $5 million to NPD research!  And exciting strides are being made.  The gene responsible has been identified, and several clinical trials have been conducted or are being planned for the future.

There is, like never before, hope for the future -- a future where
"... Niemann-Pick Disease is no longer a threat to a full and productive life
for patients and their families."   

Here are 20 ways you can get involved in the NNPDF's 20th Anniversary,
using the opportunity to raise awareness of Niemann-Pick Disease
and funds for research to beat it:

Top 5 Easy Ideas:

These ideas are simple and quick ways to raise awareness of Niemann-Pick Disease and to start a conversation with those who may have never heard of it before.

1. Use the NNPDF's 20th Anniversary logo on your email signature, your Facebook page, your blog, etc. JPG

2. Distribute PERSEVERE wristbands to 20 friends, family members and co-workers. Order form

3. Purchase a PERSEVERE window decal and display it on your vehicle. www.etsy.com/shop/victorydecals

4. Hand out NNPDF brochures to 20 people who have never heard of the disease before. NPC   ASMD Order form

5. Display a poster about Niemann-Pick Disease at your workplace, church or organization's meeting room. Order form w/pics

Top 5 Kid-Friendly Ideas:

These are "tried and true" activities that have been done by NNPDF families and supporters to raise awareness and funds, all while having fun with the kids!

1. Have a lemonade stand or sell outgrown books and toys or have a bake sale to raise money for research.

2. Have a backyard carnival with lawn games, water games, contests, etc., to bring the neighborhood together in support of those affected by Niemann-Pick Disease.

3. When hosting a birthday party, ask that guests make a donation to the foundation in honor of the birthday child in lieu of bringing gifts.

4. Have a walk-a-thon or a bowl-a-thon and pizza party with proceeds to benefit the NNPDF.

5. In cooperation with a local ball club (or other sports team), sell tickets to a game with a portion of the proceeds to benefit the NNPDF in honor of a local child affected by NPD.

Top 5 Fitness Challenge Ideas:

1. Bicycle across the entire state of Iowa!

2. Compete in a triathlon and raise money from sponsors!

3. Host a Zumba workout party!

4. Organize a 5K/10K community fun run/walk!

5. Learn to mush and compete in sled dog races!

Top 5 Major Impact Ideas:

1. Host a formal gala evening with dinner and auction.

2.  Coordinate a golf tournament event.

3. Set up a motorcycle ride poker run.

4. Plan a community-wide party around a theme such as Revenge of the 80's or a beach party, or organize a "Dancing with the Stars" event, challenging local civic groups, schools, businesses, etc. to enter a team..

5. Leave a legacy by arranging for the NNPDF to be the beneficiary of a portion of your estate or life insurance policy.

In honor of the NNPDF's 20 years, here are 20 ways for caregivers to take care of themselves. Caring for yourself as a caregiver is essential to your own health, as well as the well-being of your loved ones.   When your needs are taken care of, the person you care for will benefit, too.

Visit our Care for the Caregiver page for more ideas on how to be your best so you can give your best.

1. Laugh about something everyday.  Seek out humor in the form of books, tv, entertainment and friends.

2. Take care of yourself physically - you can't care for someone else if you become run down or ill yourself.

3. Exercise!  A brisk walk counts.  Swimming is very soothing.

4.. Eat a well-balanced diet.  Get your fruits and vegetables, along with whole grains, lean protein and plenty of water to drink.

5. Get adequate rest. Try a bowl of Cheerios and milk or a cup of chamomile tea before bed to promote sleep.

6. Talk with someone every day. Make it a point to talk to an objective person when issues arise.

7. Don’t overload your daily “to do” list – be realistic.

8. Let family and friends help. Educate them about Niemann-Pick Disease so they can better understand your loved one's needs and the challenges you face as a caregiver. Make specific requests and define tasks they can do.  Delegate responsibilities and then gratefully accept their best efforts, even if the task isn't completed quite the same way as you would have done it.

9. Give yourself permission to have a good cry. Tears aren't a weakness, they reduce tension..

10. Play games -- cards, board games, guessing games, backyard games, etc.

11. Avoid noisy, scary or overly suspenseful movies, or even the tv news, during the evening. Read, converse, or work jigsaw puzzles instead.

12. Reduce daily caffeine intake and limit alcohol consumption.

13. Get professional help if you feel your support system isn't adequate or if you feel overwhelmed.

14. Take a break every day, even if it's only 10 minutes alone to tend a small garden or spend in a bubble bath.

15. Explore community resources and connect yourself with them. Participate in a support group and/or educational workshops. Share your feelings with family and friends. 

16. Listen to music.  Choose music that will lift your mood or help you relax, depending on your needs at the moment.

17. Learn relaxation techniques, like progressive relaxation (one muscle group at a time, tense for 10 seconds and then relax).  Learn to meditate or do yoga.

18. Give yourself a treat at least once a month -- an ice cream cone....a new shirt or earrings....a night out with friends....a flowering plant ...or just ask for a hug or kiss (more than once a month!).

19. Know your limitations. If you wear yourself out, who will care for your loved one, or for you? Caring for yourself is not selfish!

20. Take stock of your attitude and, if necessary, change the way you look at the world!

For more tips and links to additional resources, visit our Care for the Caregiver page.