Wednesday, January 22, 2014

22nd Annual NNPDF Support and Medical Conference ~ San Francisco, CA ~ Summer 2014


Dear Friends and Families,

Welcome to 2014!  A new year means a new Family Conference, and we're excited to announce that this year's conference will be held in San Francisco, CA in summer 2014!  Tara Patterson-Martin and Rebecca Spencer-White have kindly agreed to host this year.
As we get closer, more information will be released.  Keep your eyes on the NNPDF Family Conference page, as well as the Newsline for the latest updates!

Monday, January 20, 2014

Riley Smith ~ 11/14/1998 ~ 01/19/2014

Photo: Keeping you and your family in our thoughts and prayers. Katelyn was blessed to have Riley as a friend.
Riley Smith ( NPC ~ age 15)

Our Dearest NNPDF Families and Friends,

It is with heavy hearts that we must inform the NPD Community that Riley Smith lost her battle with Niemann-Pick Disease, Type C, yesterday morning after a 9 day valiant & courageous battle. Riley earned her wings to join her brother, Braden (age 10), who lost his battle with NPC in 2006.

Riley's Aunt, Terri Gillespie Ford, asked us to share these words with the community.

"Riley didn't lose anything, she won this battle for a better existence in a world where children walk, talk, and eat - lots and lots of chocolate!! Riley gave her love each and every day and showed the world your body is nothing, your spirit is everything! And choosing to give it for others it what this world should be about. We will miss her terribly! She fought with everything, and passed into heaven peacefully being held in the loving arms of her parents, Trent & Julie Smith."

This comes as a blow to us all who were enchanted by her bright smile and lovely red hair. She will be remembered for her courage, her spirit and her enduring love of her family and friends. Please know that of the entire NPD community is with you in your grief. May the comfort and love of friends and family carry you on in the days, weeks and months ahead without Riley as a part of your lives. 

Additional Family arrangements will be shared on the Newsline when it becomes available.

Wednesday, January 15, 2014

Ruthven Rockstars Participate in Clinical Trial!

RuthvenDear Families and Friends,

Cody & Kayla Ruthven are making their journey to Maryland for a two week stay to participate in the current drug trial for Cyclodextrin.  They are two of 9 children participating in the trial. After the first two weeks, they will return to the Institute once per month to receive the drug in hopes that it will save their lives.

The family has a blog specifically for their experiences while in the trial that can be found here:

We wish Cody and Kayla the best of luck and look forward to sharing in this journey through their blog!