Christmas Review

This was the first year we really decorated since Dan died.  It was difficult to do, but every year is a bit different.  We have to start living with kids again and celebrating holidays as holidays, not just another day of the year.  We can't jip Shelby because we miss Dan.

So here is how we decorated:

Welcome Christmas morning!!!  The train set we bought for Dan to play with - the Geo Trax Christmas Set.  Shelby doesn't quite have the knack of the controller, but I'm sure she will next year!

New Year's Five for 5

Last year, there was a special edition of Five for 5 - goals for the new year.

So what were my goals for 2013?

2013 Goals

1. Get myself organized again. 

(this disappeared after Dan died)

2. Use my juicer more.  

(we got it for Dan to make sure he had good juice and we did use it, but obviously not much lately)

3. Evaluate the job situation. 

(the stress and bs is getting to be too much)

4. Read more books. 

(one of my favorite things to do)

5. Pay off some bills.

 (We all have them don't we?)

So how did I do?

1. I had good spurts and bad. After Shelby I wasn't as organized.  But using the lessons from Say Goodbye to Survival Mode I am getting better.  We use an online calendar (Cozi) to make sure we know what appointments and events are going on, so that has helped.

2. Nope.  Not even close.  It's used as a holder for my lunch bag.

3. There were some significant changes near the end of the year, so it will be a bit to determine if they are changes for the good.  I have a bit less than 17 years with the government, so it is tough to walk away.

4. I've read a few that I did reviews of.  Here are my reviews of Sunshine After the Storm and Say Goodbye to Survival Mode.  But I did read a bunch of newspapers and am slowly getting caught up.

5. I was hoping to pay some off before Shelby arrived, but it didn't happen.  And then a maternity leave and a government furlough didn't help.  So, no, this goal didn't get accomplished.

Let's try this again:

2014 Goals

1. Get myself organized again. 

(this will be vitally important with Shelby)

2. Read more. 

(it doesn't matter what it is, I just want to do more of it.)

3. Pay off 2 bills.

 (We all have them don't we?)

 4. Clean out some of the junk.

(We all have some.)

5. Don't sweat the small stuff.

('nuff said.)

Niemann Pick Angels

For Those We Lost in 2013

http://npdf.blogspot.com/2013/12/for-those-we-lost-in-2013.html

Merry Christmas 2013

From Our Family to Yours

And from Dan too!

Tackle the Home Front

Say Goodbye to Survival Mode Challenge – Day 5: Tackle the Home Front

We’ve already spent time cutting the clutter from your schedule, but now let’s focus on your home. One surefire way to add more time and order to your life is to get rid of excess stuff that no longer serves. The added bonus? If you’re like me, you’ll be more productive when things are orderly and clutter-free. 

If you have a home piled with clutter, you won’t be able to overhaul it in a day. Instead, create a realistic plan of attack. Take one room at a time, and commit to working on it for 15 minutes (See Day 4’s Challenge) five days each week until it’s finished. Then start on the next.

 

Once you figure out what you are keeping and what you are getting rid of, make a space for items that seem to stick out like a sore thumb in a room. If you don’t assign a place for everything, it’s going to sit out, become clutter, and accumulate some more.

 

Team Effort: Maintaining a clutter-free home requires the whole family’s commitment. No one person should be responsible for every task, chore, or project in running a home – and that includes managing clutter. Can you imagine if you did every bit of cleaning, cooking, organizing, bill paying, yard maintenance, shopping, and (go ahead, fill in the blank!) entirely on your own? Or maybe you do. If so, I’m willing to bet you are worn out and exhausted! I know I would be.

 

Each individual member should pitch in and bear the weight of running a household to the level of his or her ability. When it comes to maintaining a clutter-free environment, everyone needs to chip in.

  

Today’s Challenge

 

If you feel overwhelmed with clutter, don’t panic. I’d like you to pick one space in your home to declutter as soon as you can today. This can be a drawer, cupboard, closet, medicine cabinet, your nightstand, or if you’re feeling overly ambitious, the pantry or refrigerator. Ruthlessly clear out any and all clutter and unnecessary items you find. Consider passing on extra food and household items to friends or donating these to someone in need. When cleaning out clutter, you’ve probably heard there are three categories: keep it, toss it, or donate it. Start with this one small space and I promise you will feel a sense of accomplishment right away.

You can sign up for the Challenge at the link in the picture.

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Ok, so I'm working on this Challenge, just like I told you I would.  But I am modifying it a bit. I'm going to work on an item a week, instead of an item a day.


This is a big challenge for me.  Ever since Dan died, the clutter has taken over to the point that I just want to through out everything!!  But my dear hubby has been patient with me and slowly piling the clutter so I can get through it.  But every time I try to get started on a pile of clutter, we have to go somewhere or do something else, so the clutter sits.  Let's see what I can get done this week.


Here is Day 1 (or Week 1).

Here is Day 2 (or Week 2) with my results from Day 1.

Here is Day 3 (or Week 3) with my results from Day 2.

Here is Day 4 (or Week 4) with my results from Day 3.


Results: 
I'm still making my lists from Day 1. I don't feel I'm accomplishing as much now, the same items are still on the lists.  But then again, showering is important.

I still have my list from Day 2, and look at it but I haven't added anything to it.

I'm generally sticking to my Sunday-Thursday evening routine that I created in Day 3.  There have been a couple of days where it hasn't gone great, but it takes a few weeks to make a new habit.

My prioritized list of things from Day 4? I always have that, and it changes day by day.   I'm lucky I remember my name the last few weeks, and finding even 2 minutes to tackle something on the list...well, that's been tricky too.  So, I will make this a renewed effort over the rest of the 7 day challenge to work on this one a bit more.

Come back next week to see how I did with Day 5!

5 for Five - Dec 23

So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were last week's goals:
1. Decorate for Christmas. Done!  Tree up, house decorated, even the villages this year.
2. Read 2 newspapers a day. Total fail! :-(
3. Start implementing some of Crystal's ideas from her book Say Goodbye to Survival Mode. I'm still working on her 7-day challenge, if that counts???
4. Do some work on NNPDF items. Done!
5. Take some time for myself. I don't think I did.

Well, this didn't end up being the week I wanted it to be.  But there is one more week in this month to do good.  So here are my goals for the last week of the year!

1. Enjoy Shelby's first Christmas!
2. Start to map out a plan for next  year.
3. Read, read, read!!
4. Spend time with family.
5. Have a Merry Christmas!

Next week, I will do a recap of the year - comparing the goals I set last January to what I really did get done (or not done!!)

Nursery Decorating

I don't know if it is the "second kid syndrome" or being so busy this summer or being cautious since we didn't know Shelby's diagnosis.  We bought her crib in the spring, and we had moved a dresser and a futon into her room quite a few years ago.  But we hadn't really decorated her room. 

Dan's room had the curtains up and was all set up including Winnie the Pooh stickers and artwork on the walls - all before I was 7 months pregnant.

So I finally got around to doing some decorating.  We had painted the room many years ago this brilliant blue color.  We talked about painting over it with a purple, and we even bought a few sample jugs of different colored paints, but never got around to it.  So this is what we have now:

Thank you to my good friend (and fellow NPC mom) Shannon for the butterflies!

Gain an Extra 15 Minutes in Your Day

Say Goodbye to Survival Mode Challenge – Day 4: Gain an Extra 15 Minutes

If you want to be more productive, you need to become the master of your minutes. Do you ever find yourself with short five-minute windows of time here and there? Our schedules are so jam packed, but there always seem to be those little niches of time that pop up throughout the day.It’s easy to mindlessly pick up your phone, browse the web, or check your Facebook news feed for the tenth time. Sometimes, we’re not even aware that we’re spacing out.  But consider what you can actually accomplish in a few minutes of time. For example, you can do the following:

• Write a thank-you note or encouraging e-mail.
• Clean the kitchen sink or bathroom toilet.
• Switch a load of laundry from the washer to the dryer.
• Pull out dinner from the freezer.
• Make a healthy snack to munch on instead of grazing on high-calorie, low-nutrition foods.
• Take your vitamins, and drink a glass of water.
• Do twenty-five sit-ups.
• Tidy up a room.
• Read a short story to your child.
• Wipe down the kitchen counters.
• Text your husband to tell him you love him.
• Read two pages of the book you’re currently reading.
• Pray for someone you know who is struggling or for a need in your own life.

There are a thousand other ideas for how to use wisely the little slots of time that show up throughout the day. Don’t let these golden nuggets slip by unproductively. They can quickly add up in your favor. In fact, if you pay attention and make purposeful choices, you may find they add up exponentially.

 

Let’s take this idea a step further. Is it possible to gain an extra 15 minutes per day? If you’re not so sure, I encourage you to think about one of the biggest time wasters around: social media. 

While it might seem like 15 minutes isn’t much, investing this time every day on a consistent basis can really start to add up to significant traction made and ground covered.

 

If your goal is to:

• Lose weight – You can exercise or make a healthy meal.
• Read more – You can read a few chapters in a book (depending on how long they are).
• Save money –You can research coupon deals for the week, work on your budget, or look for ways to supplement your income.
• Get certified in a particular field of interest – You can study for an exam.
• Learn a new language – You can listen to an instructional CD.
• Write a book – You can write a few paragraphs a day.

Remove all distractions and don’t let anything deter you from your purpose during those 15 minutes. Turn off your phone, TV, and laptop (if you’re not using it). Make sure no one is around. Settle into a quiet space, and get done what you need to get done.

 

Not only does such a short window of time discourage you from procrastinating, but you also won’t struggle with running out of steam because your time will be up before you know it!

  

 

Today’s Challenge
Start using the 15-minute principle by making a prioritized list of the things you want to accomplish in the order you want to get them done. This is a very abridged version of goal setting, but for the purpose of this challenge, it’s a fantastic place to start. You need concrete, realistic goals if you want to continually move in the right direction. Without goals, all your good intentions amount to nothing. Set a timer for 15 minutes right now and begin chipping away at this list until the timer goes off. 

Think about how much time you will realistically need. Whatever those five things are, commit to getting up and doing them first thing tomorrow and then consistently for three weeks. Put your plan somewhere you can see it so you can keep track of your time and what you need to do. You may need to adjust what time you wake up to accommodate your morning routine, so think about that tonight and if you need to, get to bed earlier.

You can sign up for the Challenge at the link in the picture.

***********************

Ok, so I'm working on this Challenge, just like I told you I would.  But I am modifying it a bit. I'm going to work on an item a week, instead of an item a day.


So how did I do budgeting my time??  My morning routine is pretty good with getting up and getting out the door with everything I need for work.  I probably could stop hitting the snooze button though.  So I focused on my evening routine - what I wanted to get done when I first got home from work.  It took an entire week to get a routine in place, now I just have to practice, practice, practice:

1. empty my lunch bag
2. put the pumped milk and the ice pack in the freezer
3. pack my work bag
4. pack my lunch and leave it in the fridge

Here is Day 1 (or Week 1).

Here is Day 2 (or Week 2) with my results from Day 1.

Here is Day 3 (or Week 3) with my results from Day 2.

Oh yeah - I'm still making my lists from Day 1. I don't feel I'm accomplishing as much now, the same items are still on the lists.  But then again, showering is important.

I still have my list from Day 2, and look at it but I haven't added anything to it.

Come back next week to see how I did with Day 4!

5 for Five - Dec 16

So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were last week's goals:
1. Finish reading the preview copy of Crystal's book. Done! Now I need to re-read it and put some of her ideas into practice.
2. Finish cleaning out my expired coupons. Yes! All the November ones are gone!
3. Read 2 newspapers a day.  It felt so good to make such progress, I want to hold myself accountable!  I did 6 of 7 days! And I am done with May!
4. Finish decorating Shelby's room. I really want to get this done before she sleeps in there full-time.  I put up the vinyl stickers but still have more to do.  The stickers were what I really wanted to do, so I'm calling this a success.
5. Write at least 3 more blog posts this week. I enjoy writing, but need to make time to do it. Done!

I'm saying this is a 5 of 5 week - I did it!!!


So what are the plans for next week? Here are mine:
1. Decorate for Christmas.
2. Read 2 newspapers a day.
3. Start implementing some of Crystal's ideas from her book Say Goodbye to Survival Mode.
4. Do some work on NNPDF items.
5. Take some time for myself.


Anyone want to join me in making some goals? How did everyone do with their goals from last week? So what are you planning for this week? Feel free to post them below if you want.

How A Clinical Trial Really Looks

Last year in Nashville, the first family we met was the Papier's: mom Darrile, dad Mark and son Dillon.

Dillon reminded us of Dan, even though he was a few years older.  We spent some time talking with them and I spent some additional time with Darrile at the NNPDF meetings.

Shortly after the conference, I found this article about Dillon:

http://www.sheknows.com/parenting/articles/962672/mom-story-my-son-has-niemann-pick-disease



Last month I posted the Wall Street Journal Article about how  long it has taken to bring a potential treatment through the research to clinical trial.  Part of that article had a video of Dillon:




Dillon has recently been re-enrolled in the cyclodextrin clinical trial.  Amy Markus, the Wall Street Journal reporter, has followed Dillon as he continues on his journey: 

http://blogs.wsj.com/photojournal/2013/12/10/trials-a-race-to-save-a-boy/

A teenage angel

Tyler White-Richardson
09/11/1996 ~ 12/12/2013 

 Tylor White-Richardson ~ NPC   

Hello My Dearest NNPDF Families and Friends,

We received heartbreaking news today from Jennifer White-Richardson, that her beloved son, Tylor (Ty) White-Richardson (NPC, age 17) passed away today.

So many in the NPD community will remember Ty and his Mom taking to the dance floor at the family conferences for their annual "Mother & Son" dance.   In Baltimore, Maryland this summer ~ Ty also stole the show while break dancing with a long neon pink wig on! Whenever anyone thinks of Ty ~ they will remember a tall, handsome young man who was always ready with a thumbs-up and a quick smile that would simply light up the room. Not to mention that he was absolutely the BIGGEST Brett Favre Packer Fan ever known!

Jenn and family ~ we are all crushed to learn that your precious son, Ty, has lost his courageous battle with NPD. He is a true inspiration to all that had the pleasure to meet and get to know him.  With tears and heavy hearts ~ Nadine and all of the NNPDF families 

 Ty and his hero, Brett Favre in 2008  

Budget Your Time

Say Goodbye to Survival Mode Challenge – Day 3: Budget Your Time

In order to stay focused on the best things, you need to be sure you are purposefully managing your time. This means you need to map out a regular routine. I know, I know. This doesn’t sound as glamorous as going with the flow and being spontaneous. It might even sound boring. But until you have a solid idea of how you spend your time—and learn how to do it purposefully—you’ll spend your life simply surviving. Routines allow you to get your life in order so you can start living your days with purpose.

If schedules stress you out, don’t worry. What we’re doing isn’t complicated or overly structured. It won’t even be minute-by-minute, unless you really, really want to do that. In fact, I encourage you not to. Strict schedules usually set you up for failure. I learned this the hard way. I’d make these elaborate schedules and I’d get so flustered because I’d crammed them so full that the whole day was thrown off whack with just one or two little interruptions. So keep it simple. Instead, stick with a flexible routine.


Today’s Challenge
I want you to create your ideal morning routine. If you don’t have any structure in your life right now, this one action will make a big difference in how you approach each day. Take some time right now to write down the five things you need and want to do each morning. Things like exercise, read and pray, clean up the kitchen, wake and feed the kids breakfast, and prepare lunches or even dinner.

Think about how much time you will realistically need. Whatever those five things are, commit to getting up and doing them first thing tomorrow and then consistently for three weeks. Put your plan somewhere you can see it so you can keep track of your time and what you need to do. You may need to adjust what time you wake up to accommodate your morning routine, so think about that tonight and if you need to, get to bed earlier.

Take back your morning and see firsthand the difference it will make in your day!

You can sign up for the Challenge at the link in the picture.

***********************

Ok, so I'm working on this Challenge, just like I told you I would.  But I am modifying it a bit. I'm going to work on an item a week, instead of an item a day.

Here is Day 1 (or Week 1).

Here is Day 2 (or Week 2) with my results from Day 1.

So I planned on taking 10 minutes a day and list those things I am good at, as well as ask others.  I didn't take 10 minutes each day, but I did think about it several times a day.  I did link the post to my personal Facebook page and a few friends responded.

Some of the items I came up with: being able to explain Word and Excel functions over the phone, learning by reading, couponing.  Here are some that others came up with: inspiring others, being an advocate.

Oh yeah - I'm still making my lists from Day 1.

Come back next week to see how I did with Day 3!

5 for Five - Dec 9

So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were last week's goals:
1. Finish reading the preview copy of Crystal's book.  Nope. But I am almost done.
2. Finish cleaning out my expired coupons. Nope.
3. Read 2 newspapers a day.  It felt so good to make such progress, I want to hold myself accountable!  I read 2 newspapers on 5 of 7 days.  That is one day more than last week.
4. Finish decorating Shelby's room. I really want to get this done before she sleeps in there full-time. Nope.
5. Write at least 3 more blog posts this week. I enjoy writing, but need to make time to do it. Yes!!

I'm saying this is a 3 of 5 week - not really good at all, but I got the items done that I wanted to.


So what are the plans for next week? I'm sticking to the same goals this week as last.  I want to get them all done this week!
1. Finish reading the preview copy of Crystal's book.
2. Finish cleaning out my expired coupons.
3. Read 2 newspapers a day.  It felt so good to make such progress, I want to hold myself accountable!
4. Finish decorating Shelby's room. I really want to get this done before she sleeps in there full-time.
5. Write at least 3 more blog posts this week. I enjoy writing, but need to make time to do it.


Anyone want to join me in making some goals? How did everyone do with their goals from last week? So what are you planning for this week? Feel free to post them below if you want.

Worldwide Candlelight Ceremony

The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor the memories of the sons, daughters, brothers, sisters, and grandchildren who left too soon. As candles are lit at 7:00 p.m. local time, hundreds of thousands of persons commemorate and honor the memory of all children gone too soon.

Now believed to be the largest mass candle lighting on the globe, the 17th annual Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. 

From the NNPDF:

Please join us in honoring those who lost their fight with Niemann-Pick Disease in 2013, and all those who were gone too soon:

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

The link above commemorates all those precious loved ones that we lost to Niemann-Pick Disease during the past year ~ please take a moment to view the link and hold these precious ones in your thoughts and hearts.

7 years and 4 months

Happy 7th Birthday Dan!  I see you sent some snow to us for your birthday. Even though its has been 2 years, you are never that far from our thoughts.

 

Here is the photo and thoughts we put in a Niemann Pick 2013 calendar.

It is also your sister's 4 month birthday. I know that you are watching over her and I'm pretty sure she sees you. Keep being her guardian angel.

Focus On Your Strengths

Say Goodbye to Survival Mode Challenge – Day 2: Focus On Your Strengths

It is so easy to compare yourself to other women. You worry about what you don’t have that someone else does. Instead of beating myself up over what I can’t do, I’m learning to appreciate and exercise my gifts.

Think about some of the personality traits, qualities, gifts, talents, and characteristics you really admire about yourself. Maybe you are naturally self-disciplined, compassionate, or hardworking. Maybe you are gifted in music, entrepreneurship, or writing. Crunching numbers, cooking and baking, or babysitting the neighborhood kids might come easily to you. Maybe you enjoy budgeting, encouraging others, or serving those in need.

Today’s Challenge
This challenge is all about you. I want you take 10 minutes to brainstorm your innate gifts, talents and abilities. Think about what really lights you up, what people rave about or what you may even take for granted because it comes so easily for you. To get in flow, stand up and stretch, turn on some music if you like. Maybe even step outside for some fresh air.

Then, set a timer for 10 minutes (I use Online-Stopwatch.com or the timer on my Smartphone) and write down what you like, admire, and appreciate about yourself. If you get stuck, call a family member, friend or colleague and ask them to tell you your top three strengths. You DO have talents and gifts, you just may need a little help recognizing them.

 

Now go for it! 

You can sign up for the Challenge at the link in the picture.

***********************

Ok, so I'm working on this Challenge, just like I told you I would on Monday. But I am modifying it a bit. I'm going to work on an item a week, instead of an item a day.

Last week for Day 1 (or Week 1) this is what I wanted to do:
I've started two lists for the next few days: one for work and one for home. Some of the home list is on my weekly 5 For Five post.  I will make another home list for the weekend and then two more lists for early next week. I will keep you updated on how I do.

So how did I do? Well, I created my lists for Wed-Fri (work and home), Sat-Sun (home), and Mon-Tues (work and home).  I created the lists on my phone so I couldn't cross items off, but I was able to truly see what I thought about doing each day and what really didn't need to be done that day and could be put off for a day or two.  I was able to add a symbol to those items I did complete, and quickly found myself looking forward to having more symbols so I knew my list was getting shorter.  At the end of each time period, I deleted the items that were completed and added new ones.

So for Day 2 (or Week 2 in my case), I'm going to take 10 minutes a day and list those things I am good at.  Please readers (family, friends, others) help me out. Leave a comment below, use the contact form to the right or call or send me a message directly.  Next week I will share with you some of the items from my list.

Giving Tuesday

Today is Giving Tuesday. You didn't know that? I didn't either until I saw several people writing about it.

You can read more about it here.

What is #GivingTuesday?

We have a day for giving thanks. We have two for getting deals. This year help us create #GivingTuesday. A new day for giving back.  On Tuesday December 3, 2013, global charities, families, businesses, community centers, students and more will come together to create #GivingTuesday.

It’s a simple idea. Just find a way for your family, your community, your company or your organization to come together to give something more. Then tell everyone you can about how you are giving. Be a part of a national celebration of our great tradition of generosity.

So how can you help?  There are easy ways to donate time or money to a non-profit.  Of course, I am going to encourage you to donate to the National Niemann Pick Disease Foundation (NNPDF) in memory of my son Daniel.

So here are some ways to participate:

Easy no cost option:  Register with GoodSearch. I have sent almost $10 to the NNPDF just by searching!

Signing up is simple:

• Register and choose the National Niemann-Pick Disease Foundation as your supported foundation.
• Once signed in, start using their search engine every day as you normally would any search engine.  Make www.goodsearch.com your home page if it helps remind you!
• For every search you click a link from the results page, Goodsearch gives $.01 to the foundation, which adds up fast!
• It even keeps track so you can see how much YOU have earned on our behalf!

Once you are on GoodSearch, you can complete Surveys or shop online through GoodShop.  All with benefits going to the NNPDF, for no cost out of your pocket (unless you buy something through GoodShop).


Are you an Amazon shopper??

AmazonSmile is a simple and automatic way for you to support the NNPDF every time you shop, at no cost to you. When you shop at smile.amazon.com after registering, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate 0.5% of the purchase price to the NNPDF!

Registering is easy!

• Visit: http://smile.amazon.com/ch/35-1844264 & sign in under your current amazon account, or register one if you are a first time user. It may ask you if you want to support the NNPDF in a pop up, click yes to continue.
• You'll notice when it returns you to the AmazonSmile home page the top left corner now says "Supporting: National Niemann-Pick Disease Foundation".  This is how you'll know it registered correctly.
• Make sure you always go to www.smile.amazon.com so your account registers the donation upon checkout.  Bookmarking the address can help as a reminder to!  If you use the standard www.amazon.com link, purchases made will not register to benefit the NNPDF.

 

You may wonder how you'll know if an item qualifies for a donation to the NNPDF, as there are some restrictions when a donation WILL NOT be made to the NNPDF (ie: Gift Cards)…..follow these simple tips:
~ While on a product's page, you'll be looking for the text below, which is usually placed under the area where it says if the product is in stock or not.

 

That's it!  Upon checkout you will have provided funds to the NNPDF without doing anything more than shopping! It's the gift that keeps on giving!


Something simple but wearable: An NNPDF Persevere For Life wristband.

The popularity of wristbands cannot be denied, as they are not only a simple way to wear your cause, but also as a constant reminder of who we fight for in our Quest for a Cure!

Recently updated with "Persevere for Life" engraved along the band, these periwinkle wristbands are so versatile they can be used all year round as:

• Local fundraiser items to help build a sense of community, whether as saleable items or handouts  - both of which to help promote awareness
• Party favors in grab bags for birthdays or holidays
• Stocking Stuffers!
• Crafters can put their own creative spin on it - why not link them together to make a holiday wreath?
• Purchase one for yourself in Honor or Memory of a loved one as a lasting keepsake, while simultaneously helping to fund needed research.

YOU can help raise Awareness, but you can also give something that means so much more than a standard gift does. The gift of Hope for a better tomorrow for all NPD patients and their families.

Wear the Cause in your Heart on your Wrist.

*Youth & Adult Sizes available.



Want a great gift? WillowWicks!



Lisa Chavez, of New Mexico and Mom to Breann (who passed away in 2006 at age 3 from NPC), hand-crafts the special PERSEVERE candles to benefit the NNPDF. A Whopping 40% of the total sale cost for these items will be donated directly back to the NNPDF!  Wow ~ what a GREAT way to give a wonderful gift and support the NNPDF to boot!

Just in time to help with your holiday gift giving, Lisa has created a NEW “PERSEVERE for Life” line of hand-crafted products including both candles and lotion! For those who have had the opportunity to attend the NNPDF annual family conferences and are welcomed into the large conference session rooms by the warm, beautiful scent of the memorial candles ~ these candles are made with the same comforting warm aroma ~ Butterfly Kisses.

                                

Both the candles & lotion are scented with the NNPDF signature Butterfly Kisses scent (aka Creamsycle). Special sizes and prices for our NNPDF family membership are:

• 16 oz. tin candle - $20
• 8 oz. tin candle - $12
• 8 oz. lotion - $10

For NPD Willow Wick Candles and order form information please visit the Niemann-Pick Fundraiser Candles page. Remember ~ 40% of the total sale cost will be donated to the NNPDF in support or in honor of your loved one.


Another online shopping option: iGive (including gift cards)


From the hard core, to the casual online shopper, iGive.com is perfect for all types!

So what is iGive and how can it be used to benefit the NNPDF?  In more ways than you think!

When you sign up using our specific link, which will automatically set the foundation you wish to benefit as the NNPDF, you have two choices:

• I want to browse stores through iGive's web site - This means you visit iGive.com and browse their large catalog of stores that, when the links are clicked, will automatically detect that proceeds for purchases go to the NNPDF upon check out on retailer's web sites.
  
  
• I want iGive to tell me what sites benefit the NNPDF as I visit them on my own - This requires the free iGive Button, which sits in your internet browser. As you visit web sites, you'll get a popup telling you automatically if purchases from that site will benefit the NNPDF. The download is simple and quick!

iGive also gives you the chance to buy Gift Cards, while still benefiting the foundation! While viewing the list of stores on the iGive web site, you can use "Options" to narrow it down to only stores who offer gift cards, like: Kohls, Gamestop, Lowe's, Forever 21 & Cabela's just to name a few!

It has never been easier to purchase for loved ones and benefit the NPD community at the same time!  You were planning to shop online, why not take that one extra step and make each purchase count to a better tomorrow? 

Give the Gift of Awareness... Give the Gift of Hope!

5 for Five - Dec 2

So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were last week's goals:
1. Do Crystal's 7-Day Challenge. I'm making it a 7-week challenge.  You can read more about that here.
2. Finish reading the preview copy of the book. I'm not quite done with it, but have made substantial progress.
3. Read 2 newspapers a day. I did 5 of 7 days (weekdays).
4. Finish decorating Shelby's room. Nope.  At least she doesn't realize it yet!
5. Write at least 3 more blog posts this week. Done!

I'm saying this is a 4 of 5 week - so really, really good!


So what are the plans for next week?
1. Finish reading the preview copy of Crystal's book.
2. Finish cleaning out my expired coupons.
3. Read 2 newspapers a day.  It felt so good to make such progress, I want to hold myself accountable!
4. Finish decorating Shelby's room. I really want to get this done before she sleeps in there full-time.
5. Write at least 3 more blog posts this week. I enjoy writing, but need to make time to do it.


Anyone want to join me in making some goals? How did everyone do with their goals from last week? So what are you planning for this week? Feel free to post them below if you want.

Elks Memorial Sunday

The First day in December is designated as Elks Memorial Sunday, and it is mandatory for all Elk Lodges to conduct a Memorial service for the members who have passed away during the year. 

 This day remembers all those Elks who have passed away with a special dedication to those who have been lost since the last Memorial.  

There is also a special recognition to those veterans who have been lost and those who continue to fight, as well as a dedication to those lost on September 11, 2001.

This is a public ceremony and is very moving and touching. If you ever have a chance to attend, please take the time to do so.

This year, the poem below got me choked up:

TO MY DEAREST FAMILY:

Some things I'd like to say
but first of all to let you know
that I arrived okay

I'm writing this from Heaven
where I dwell with God above
where there's no more tears
or sadness there, is just eternal love

Please do not be unhappy
just because I'm out of sight
remember that I'm with you
every morning, noon and night

That day I had to leave you
when my life on Earth was through
God picked me up and hugged me
and He said I welcome you

It's good to have you back again
you were missed while you were gone
as for your dearest family
they'll be here later on

I need you here so badly
as part of My big plan
there's so much that we have to do
to help our mortal man

Then God gave me a list of things
He wished for me to do
and foremost on that list of mine
is to watch and care for you

And I will be beside you
every day and week and year
and when you're sad, I'm standing there
to wipe away the tear

And when you lie in bed at night
the days chores put to flight
God and I are closest to you
in the middle of the night

When you think of my life on Earth
and all those loving years
because you're only human
they are bound to bring you tears

But do not be afraid to cry
it does relieve the pain
remember there would be no flowers
unless there was some rain

I wish that I could tell you
of all that God has planned
but if I were to tell you
you wouldn't understand

But one thing is for certain
though my life on Earth is o're
I am closer to you now
than I ever was before

And to my very many friends
trust God knows what is best
I'm still not far away from you
I'm just beyond the crest

There are rocky roads ahead of you
and many hills to climb
but together we can do it
taking one day at a time

It was always my philosophy
and I'd like it for you too
that as you give unto the World
so the World will give to you

If you can help somebody
who is in sorrow or in pain
then you can say to God at night
my day was not in vain

And now I am contented
that my life it was worthwhile
knowing as I passed along the way
I made somebody smile

So if you meet somebody
who is down and feeling low
just lend a hand to pick him up
as on your way you go

When you are walking down the street
and you've got me on your mind
I'm walking in your footsteps
only half a step behind

And when you feel the gentle breeze
or the wind upon your face
that's me giving you a great big hug
or just a soft embrace

And when it's time for you to go
from that body to be free
remember you're not going
you are coming here to me

And I will always love you
from that land way up above
Will be in touch again soon
P.S. God sends His Love

--Author Unknown