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.
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.
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!
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)
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
Posted by August 6, 2013 8 Commentson