Niemann Pick Conference

The National Niemann Pick Disease foundation’s 20th annual family support and medical conference is in Nashville Tennessee … and starts tonight.  Steven and I very much wanted to attend, but with all our happenings and Wylder’s celebration coming up on the 25th … we just could not make the trip.  It is a conference loaded with information and hope.  Steven was able to attend last year with his brother (uncle puppy) while I stayed home with the Warrior … Steven STILL talks about the event with a sparkle in his eye today.

Where hope and harmony unite

The conference units all families with children with ALL types on Niemann Pick Disease (A, B and C).  Given that there are usually only around four Type A cases at any given time in the United States … we all feel very much connected, and there are many I wish I could just give a squeeze too this weekend.  Last year Steven and Uncle Puppy were even able to meet Miss Kaitlyn and her family … no regrets … what a family! 

(me and w swiming at home last year when they were at the conference)

The Memorial Ceremony is tonight … we know there will be a candle for Wylder and a room overflowing with love.  The foundation has even asked to read the poem written for Wylder by Amanda Larson at the opening ceremony … this makes our hearts sing!  We received a package just today from the foundation with a reminder note that they are here for us always, and it included a beautiful memorial candle for our Warrior.  We will light it tonight and think of you all doing the same.  What a special support group to be a part of.

In our home, we feel as up to date as possible on the research currently happening with type A … but our ‘information is power’ outlook always keeps us anxious to learn more and stay connected to the NPA medical community.  We are very much involved and supportive of all research for Niemann Pick and want to have treatment options in our lifetime.  We are currently even working with Mount Sinai and Researchers with never been done before data … more scoop on this coming soon.  We believe and continue to have hope always.

We know it is going to be special event and we wish we were attending. We will miss seeing you Niemann Pick Family but are sending you all so much love from Arizona.  xoxo  Keep up with the event at www.nnpdf.org

Comments

  1. Such a beautiful tribute to Wylder James. His legacy is forever xoxoxox Special hugs to you and Steven at this time.

  2. Tracey McFadden says:

    You are an inspiration!

  3. Cathy Johnson says:

    Oh Shannon – thank you so much for continuing to be a voice for Wylder and for all children and families who are battling this terrible disease. Love, hugs and prayers continue to fly to you from all over the world. As I have said before, through your blogs we have come to love and care for all of the NPA families as if you are our own. I continue to follow all of the blogs because I have come to feel as though you are all family. I look forward to your continuing updates on NPD and the progress being made in the fight against it. I hope to be able to start my day with you, Deanna, Chelsea, Sarah and Lori for a long time! You are all loved. xoxo

  4. someone just sent me a picture of Trek’s candle lit at the ceremony-it made me teary. that is so kind and thoughtful of them to do that. I cannot wait to hear about your research. xoxo

Speak Your Mind

*