NNPDF Conference

We have made it home sweet home after the Niemann Pick Conference in Baltimore last week.  It feels good to be back and to have another “first” under our belt.  It was a beautiful weekend that encompassed an overwhelming amount of emotions.  It was so beautiful, wonderful and fabulous to meet and squeeze other families we have only met over the internet.  Weather their children, cousins, brothers or family battles or battled type A, B or C did not matter, it was a love like a family.  A family “you never want to be a part of … but are so grateful to have”.  We felt we met connections we will have for a life time this weekend. 

Simon, Heather and Baby Bella in Tummy.  Parents of and Angel Princess  Monica (NPC)

Simon, Heather and Baby Bella in Tummy. Parents of and Angel Princess Monica (NPC)

We meet the board members of the both the National and International Niemann Pick Disease Foundation(s) and got a much better understanding and appreciation for all that they do.  Because of their their efforts … this conference had the largest number of attendees to date (about 250 people).  There were around 30 people representing Niemann Pick B, us for Niemann Pick A and the magority in attendence were for Niemann Pick Type C.  It was a HUGE undertaking to put together an event of this magnitude with the different meetings, and activities underway, inculding patient care for all of the children in attendance … WOW!  Their work certainly paid off as it was a very sucessfull event full of love.         

We also heard inspiring stories of HOPE.  We saw the accomplishments of others that will keep Steven and I striving for answers knowing it IS possible (no matter how difficult).  For example we meet Cindy Parseghian in person.  Daughter to world renowned Notre Dame Football coach Ara Parseghian, but better known for her fight for treatment options for Niemann Pick Type C … as she lost three of her four children to the disease.   The Ara Parseghian Medical Foundation has raised over 40 million dollars since it began and Niemann Pick C is beginning to see the light.  These children, their families, and the NNPDF are coming together for therapy options that are happening.  Risky and difficult … but happening. HOPE.  It’s not perfect, but it is hope and a reminder that by collaborating and working together you can move mountains. 

http://www.parseghian.org/index.html

We also saw Dean Greg Crawford (of Notre Dame) finish his nearly 4,000 mile bike ride behind the hotel that the conference was being held at.  With flags waving and clappers clapping in the hand of lots of children battling Niemann Pick Type C recognizing he was riding for them, it was inspiring.   For this ride, he raised over $500,000 for type C and an immense amount of awareness.  Roadtodiscovery.nd.edu INSPIRING!

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Now, as most of you know Niemann Pick Type C is a very different disease than Type A and B.  That does not mean that there is not much to be learned from the therapies they are exploring and to use their pioneering as a catalyst of hope to do so much more for Niemann Pick A and B.    Understandably, Steven and I were the only Niemann Pick A representation at this years conference. With difficulty of traveling with children that have Type A and great loss you feel after they are gone, it is beyond difficult.  There were many times this weekend I had to excuse myself and I found myself taking a nap daily because of how emotionally taxing it was.  I felt grateful to be a voice for the disease and to learn the latest on what the foundation is funding for the disease.  I felt grateful to meet some beautiful faces persevering against Type B and their families who are right alongside them.  I also felt grateful for Steven, whose strength and passion for his son is unfathomable.  He chooses to learn and to be the catalyst of change for a disease that does not get enough attention.  It is everything to him, he is Wylder’s voice, he is fighting for Wylder and ALL children battling NPA, and is grieving by taking action.  He often pushes me to what sometimes feels like beyond my limits with a laundry list of “firsts” that I would rather stay in bed through, but I am so grateful he gives me the extra nudge.  I can see, I can see what he see’s and feel what he feels and will continue to come together with so many others to make a difference for Niemann Pick A and B.  It’s time.

I am going to end here for now (before this turns into a novel).  Tomorrow I will write and share about the research happenings for type A and B and some of the faces behind the disease that we met.  For now, keep these children and their families with Niemann Pick A, B and C in your prayers.  And those who have lost.  It is a family far too big. 

(the memorial at the conference … these are the children who lost their lives to NPA in the last year)
jake

jake

lily

lily

riley

riley

Wylder, we love miss you little bean.  You were my strength this weekend.  Thank you, for the friendships, relationships and collaberations you showed us.  We will find the way and listen to you always. xoxo

News report read: "Humpback whale spotted off the coast of Baltimore today ... Unheard of this time of year". Hi wylder!!!!

News report read: “Humpback whale spotted off the coast of Baltimore today … Unheard of this time of year”. Hi wylder!!!!

 

Comments

  1. I thought about you and Steven all weekend, Shannon, and kept you both in my prayers. I can only imagine how hard it was to attend, but wow, how proud we are of you and your determination, your never-say-no demeanor, and your selfless perseverance to one day knock the stuffing out of NPA. Steven is one tower of warrior strength….he is beyond amazing. Glad you both are home safe and sound. xoxoxox

    • Mommy and Daddy says:

      Thank you so much Leslie. All the prayers we recieve daily help us through each and everyday and we feel them from around the globe … especially WN NY! Thank you for continuing to read our blog and show us so much love. xoxo S

  2. Thank you so much for the post and pictures! I wish there was something I can do. I follow everyone because I was introduced to NPA through a friend of a friend and it all started with Kaitlyn and I felt that because of her God wants me to do something, I am still working and searching on what I can do for him. I will find it.

    • Mommy and Daddy says:

      Just by reading all of our blogs and standing behind ‘the cause’ is plenty Penny. Kaitlyn is a very special little girl who spread so much hope accross the web, it is incredible. Thank you for joining us in our fight. xoxo

  3. Cathy Johnson says:

    It’s not hard to see where Wylder came by his “Warriorness” – his parents are heroes! :) What an amazing experience this must have been. I can’t wait to hear about the research that is going on and learn how Wylder Nation can help. You are so right, Shannon – it’s time. Let’s kick the stuffing out of NPD on all fronts!

    • Mommy and Daddy says:

      Thank you SO much Cathy. Wylder certainly taught us that Warrior Code of Honor, didn’t he? Look out NPA, it’s time. xoxo

  4. wow, Shannon and STeven. That was amazing. I thought about you all week shannon, I know it was so hard for you. Wylder on your heart every breath and second of ever day. I am so glad you got to go and for STeven’s contagious passion, I loved meeting him and seeing it in person. THanks for the update and representing for NPA. you are such amazing people. so much love ,Chelsea

    • Mommy and Daddy says:

      It was Chelseas. It was an amazing weekend and so many sweet people asked about you and your beautiful family. You are so loved and inspiring to many other Niemann Pick families. I am glad you got to get a taste of Steven’s contagious-ness … next visit you will see fire under him! Sending our love to you. Can’t wait to read that blog that your RV is on the road … xoxo S

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