A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Monday, May 4, 2015

How One Family Helps Another

Our Niemann Pick "family" is close, even though we are spread across the world.

Yesterday, I hosted a Jamberry fundraiser for Kelly, who lost her daughter Ashlyn a few weeks ago.  The 10 or so ladies and I had a great time giving ourselves manicures and sharing memories of Ashlyn and Dan.

You can still help.  The online portion of the fundraiser is open until at least Mother's Day.  Kelly will be saying her final goodbyes to Ashlyn on Monday May 11.  The online fundraiser is on Facebook and at my website.  At least 20% of all sales are going to help cover funeral expenses.

Oh and today, Monday May 4, is the last day to pick up this great Mother's Day Gift Set (although you don't need to be a mom or give it as a gift to your mom).  Four exclusive products (3 wraps, 1 lacquer), taffy, and pedicure tools!

But that isn't all.

The Leoni family in California is participating in the National Mobility Awareness Month Local Hero contest.  You can vote every 24 hours and help this family possibly win a free wheelchair van.  It's free to register and vote.  If you answer the trivia question correctly, you get 2 votes!

And there is more!  Are you into Thirty-One bags?  There is a fundraiser going on now to support the Heinze family to cover their expenses to the NNPDF Conference in Chicago.  There are 2 components to this fundraiser.  Part One is the Large Utility Totes are $40 (have to be ordered by contacting one of the reps personally - not ordered through the website).  Part Two is anything else through the website.  Use the contact me feature on the right to message me and I will get you the contact number of the reps if you want the Large Utility Totes (or go to their Facebook event).

Quinn Madeline Inc is hosting an in-person and virtual 5K run.  Dear Quinn had Niemann Pick Type A and died about the same time Shelby was born.  You can register for the run here.
The Quinn Madeleine Foundation is a 501(c)(3) nonprofit wish-granting organization for children under age 3 diagnosed with a terminal or life-threatening illness. QMF also seeks to aide in the prevention of, and support research on treatment and a cure for, Niemann-Pick Disease Type A.

There are so many events going on, it is hard to keep up!  Many are "virtual" events, like the ones I've posted here, so anyone, anywhere can participate.  Others are local to their specific communities.

At one point or another, we will all be in the same place, at the same time - fighting this monster disease called Niemann Pick.  If you can help out, in anyway, even if it is just sharing this blog entry or any of the events, it is much appreciated.  But sharing, you are caring and educating.  And we all need more people to know about the disease to be able to help those who are not yet diagnosed.


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