The end of October

The end of October Awareness Month is here.  That doesn't mean that I stop talking about Niemann-Pick Disease or my experience or asking for financial support for the families being helped by the NNPDF like we were.  Here are the final quick facts for this year:

October Awareness continues

If you have followed this blog enough, you know that October has a push for Niemann-Pick Disease Awareness.

If you are new, you can read the detailed story as to why this is so important to me.

For the short version, grab a tissue.  My son was diagnosed with Niemann-Pick Type C at age 4 1/2.  He died from disease complications before he turned 5.

Well before I knew this rare disease existed, and well before we were personally affected, October was designated as Niemann-Pick Disease Awareness Month.  We have an uphill battle each year, against some other more well known diseases. 

But the underdog has continued to rise - with your help.  By sharing my blog posts, sharing from the National Niemann-Pick Disease Foundation Facebook page, and donating, the disease is being identified earlier and treatments are becoming available.

So thank you.  If you are an affected family, please reach out to me.  I am happy to listen, talk, share my experience, and help you find resources to support you.

October Awareness - Vision of Hope

The National Niemann-Pick Disease Foundation has been around for 25 years, providing support to families and funding promising research.

In recognition of that, the Vision of Hope Campaign is encouraging donations of $25 in recognition of the 25 years.

In addition, I am giving 25% of all Jamberry sales during October to the NNPDF.

And I can't forget about the information squares for this week:

October Awareness has begun

Every October I post information about Niemann-Pick Disease.  October is the month selected to share Awareness.  Yes, we are in an uphill battle against some other awareness months.  But we persevere.

This month, I am donating 25% of all sales from my Jamberry business to the NNPDF.  In addition, my entire commission is donated for my Niemann-Pick nail wrap and a coordinating lacquer, So Presh.  Go check them out.

Here are the first 5 facts for October. Share them from new new NNPDF Facebook page

Conference is over... Our work is just beginning

During May, June, July and early August, I spent countless hours organizing materials, helping with Conference logistics and making sure families were well supported.

One major aspect of the conference is our memorial table.  This year there were 9 frames.  Still 9 too many.

Progress is being made, slowly.  In the 5 years we have been going to the NNPDF Conferences, we have gone from 0 clinical trials to 4.  There is still much that needs to be done.

The other big highlight of the weekend is the Gala dance.  And a little girl enjoyed every minute of it!

October is coming.  That means awareness and a campaign: $25 for 25 years of support to families. Please watch for ways to contribute.

Random musings

Life and death.  It's a cycle for us all.  We don't know how long that cycle is.  So we live our lives doing stuff.  And then something happens to make you realize that the cycle is shorter than you think.  What do you do then?

We are all born for some reason. There is some "job" that each one of us is responsible for.  You may never know what it is, or it could be something spectacular.

So where am I going with this?

The past few years, I have really been thinking about who I am, what I want to do is with my life, how I want to live my life.

I've realized a few things:
1. Dan was here to help me give back after he was gone and to help me start this introspection.  Dan led me to the NNPDF. While it hasn't been an easy road for the past couple of years, the NNPDF is now in a different place and is moving in a good direction.
2. Shelby is here to make me slow down and smell the roses. She loves spending time with me doing silly things.  Her desire to be with me as much as possible has made me look at where my life is and where I want it to be.
3. Finding Jamberry and joining the company appeared to be completely "out of character" for me.  But it came along at the right time to help me with understanding who I really am and why I am involved in the things I'm involved in.

Taken separately, each can seem unrelated.  Taken together, I am seeing a different picture of who I am and what I want in and from my life.

Some people may call it a "mid life crisis" and maybe it is.  I call it discovering who I am.

It's never easy....

I know I vowed to write more. Living with a preschooler, working, and spending time with family have a way of making the time fly.

Until recently.  The first few weeks of April have been hard.  Really hard.

5 children, 1 week

Life is difficult, seeing this cluster reminded me of how difficult life can be and know much we need to just live it.

Five families need to move forward without someone.  It's times like these I am happy to be a part of the Niemann-Pick community. We all "get it" and many of us have been where these families now are.

So I ask all of you to please hold these families in your thoughts, as they will need support to get through some of the hardest days they will ever know. 

It's October - Post 4

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October - Post 3

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October - Post 2

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org

It's October

Ok, so we are over 10 days into the month.  Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org