The End of an Era

If you have spent any time in the New York Capital Region, you have heard about Hoffman's Playland.  It is an amusement park designed exclusively for young kids.  It is very affordable and geared toward family fun.

This is their last year in operation after 50+ years.  So we took Shelby down to enjoy some of the fun.

What happens if you can't eat?

Have you ever thought about what you would do if you couldn't eat?  I'm not talking just about chewing, I'm talking about getting any sort of nutrients in your mouth.

Not being able to eat safely is a big problem for children with Niemann Pick Disease.  As the disease takes it's toll, the muscles weaken which makes swallowing difficult.  Eventually, food and liquids start entering the lungs and causing pneumonia.

There are various stages of swallowing difficulty.  Some people can do well with small pieces, others need pureed foods (like baby food) and others can do thickened liquids but not thin (like milkshakes but not water).

And then there are those who can't do any of those.

5 For Five - Aug 25

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Read newspapers until April 30 (10 calendar days and 11 newspapers). Done!

2. Remove 3 "adult" items from Dan's room. Done! And medical supplies were provided to others who could use them.

3. Re-organize Shelby's toys. Started to do this.

4. Pre-write several blog posts. Nope.

5. Put my Jamberry nails on. Done! See the picture.

So this was a 3.5 out of 5.  Some of these are works in progress. But the one I did do was the most important.  I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

Can NPC actually SAVE a life?

These past few weeks there has been extensive media coverage of the Ebola outbreak and the 2 Americans who were infected and brought to Emery University for treatment.

What isn't being covered as much is the potential research into Ebola.  The CBS news article linked below made its rounds through the Niemann Pick community because it explains how Ebola transfers from individual to individual in fairly non-medical terms.

So why am I writing about it?  I've copied the important paragraph below:

I've been couponing for quite some time and have had some wonderful successes.  You can see my posts here and  here.

We are currently spending about $100-$125 a week on groceries for 2 adults and a toddler. But I am always looking for better ways to save money.   Just last week I called and cut my cable bill by about $30 a month!

And TODAY (8/19/14), Crystal Paine from Money Saving Mom is re-launching Grocery University!  She will have special pricing beginning at 5am Central Time!

Are you tired of spending so much on groceries?

You don’t have to bust your budget to feed your family! Enter Grocery University: a 2 hour, 19 minute audio course that will teach you everything you need to know about making the most of your grocery budget, regardless of whether you’re new to bargain shopping or have been a super-shopper for years.

5 For Five - Aug 18

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Read newspapers until April 26 (14 calendar days and 16 newspapers). Nope.  I read through April 20, which is 8 days and 10 newspapers.

2. Remove 3 "adult" items from Dan's room. Yes. Slowing cleaning out the stuff I don't want Shelby playing with.

3. Re-organize Shelby's toys. Nope.

4. Pre-write several blog posts. Done!

5. Call cable to reduce the bill. Done! Saving about $33 a month.

So this was a 3.5 out of 5.  Definitely not good. But the one I did do was the most important.  I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

A Wonderful Birthday

Can you believe it has been a year since my rainbow baby Shelby was born?  It's amazing how quickly time has gone.  Ms. Shelby is all crawling over the house, getting into things and standing on our own.

We had a nice quiet actual birthday celebration.

 With mom and dad

RARE Patient Advocacy Summit - and Online!

I saw this on the Global Genes webpage and wanted to share it.

2014 RARE Patient Advocacy Summit

Please join us for our

3rd Annual “RARE Patient Advocacy Summit”

held on September 11-12, 2014

at the Hyatt Regency in Huntington Beach, California.

Empowering Patient Advocates to Become Successful Activists

A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your feet, and requires a continual investment of time and money as you try to determine what should be your next step. The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful ACTIVISTS and provide the discussion, insights, and tools to move down this advocacy path, equipped and prepared.

Our Patient Advocacy Summit will offer practical advice, case studies, and networking opportunities as we learn from one another. The goal is to have patient advocates walk away with a better understanding of the challenges they will face and where they can be the most effective in helping advocate for their disease/disorder.

You will:

• Hear from experts on a variety of topics affecting the rare disease community
• Understand and create strategies for challenges facing caregivers
• Be introduced to new science advances
• Learn how to become an unstoppable advocate and how to build an effective organization
• Become equipped and educated around successful lobbying
• Understand Drug Development – Why patients are playing a critical role and what that is
• Have opportunities to network with other rare advocates and rare industry partners

By attending this two-day event, you will meet new friends and colleagues, gain a new perspective on the complexities and questions that need to be considered in order to become effective advocates for rare disease patients and you’ll be ready to help make advances for the rare diseases we represent.
For those not able to attend in person, you will be able to join via Live Stream.

In-Person registration includes:

* Thursday Patient Advocacy Summit (12:00 pm to 6:00 pm)
* Friday Patient Advocacy Summit (8:00 am to 6:00 pm)
* Friday: Networking event (evening)
* Saturday: Day of Beauty (Advocates only)


Who Should Attend:
>Rare disease patients, caregivers, family members and friends
>Patient advocates

Whether you are new to this rare disease journey or an experienced traveler, an individual advocate or part of an existing rare disease organization, you will gain value from this event.

Register HERE


Thank you to our generous sponsors!

5 For Five - Aug 11

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Read newspapers until April 15. I read  April 12, which is 13 newspapers
2. Remove 5 "adult" items from Dan's room. Nope.
3. Pre-write 2 blog posts. Nope.
4. Enjoy a special birthday! Yes! Watch for a post this week
5. Get printer ink to print pictures. Nope.

So this was a 1.5 out of 5.  Definitely not good. But the one I did do was the most important.  I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

5 for Five - Aug 4

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Finish the March newspapers. Done! Having a few long plane flights helped.
2. Remove 5 "adult" items from Dan's room. Nope. Ran out of time.
3. Pre-write 3 blog posts I pre wrote 2, one posted last week, one will post next.
4. Give my Peace Lilly plant some love. Done! I cleaned it up and got rid of the dead leaves. It is still thriving, even when I forget about it. It was sent to me after Dan died, and he must like it because I can't kill it.
5. Print pictures of Shelby. I started to print pictures, but the ink in the photo printer is out, so I sent them to Walgreens and picked them up when I got to CA.

The beautiful city of Burlingame, CA, just south of San Francisco

So this was a 4 out of 5, and the one I missed I'm not kicking myself over. I'm getting my groove back. I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

In Memory