Newport Weekend

Steven and I had a remarkable time at the Global Genes Conference.  It was informative, powerful, connected and an inspirational group of people.  We are so appreciative we were able to attend.   



Friday was a day packed from start to finish with information and panels of the best of the best to inform us (the advocates).   One of the most powerful pieces to me on Friday was when we were all reminded of the power of a collective rare disease voice.  It was a simple demonstration that went something like this;

Stand Up if you are representing Niemann Pick A today.  In a room of nearly 300 people Steven and I would be the only two standing.  Shouting as loud as we could, we would barley be able to be heard at the front of the room.

Stand up if you are representing Lysosomal Storage Disease.  Okay, the group would get bigger … about 15 standing in a room of 300 now.  The voice was dim, but now at least the entire room could hear it.

Now, stand up if you are representing rare disease.  As the entire room stood and ROOAARRED, we could be heard across the bay full of boats behind the hotel.  Together the power of the collective voice was powerful.

This was such a beautiful reminder and demonstration for our rare disease families.  It really summed up the value and purpose of the global genes as an organization.  To support us as individual organizations by allowing us to be a voice together as a larger community, no matter what individual disease we are fighting we are all in this together.


Saturday Steven and I had the privilege of being invited to listen to a panel of the best of the best scientist coming together to create their own Non-Profit organization.  They shared their collaborations and ideas for their future with us and it was so informative and exciting.  We got to spend the entire afternoon with this amazing group of people that we hope to continue to build our relationship with.  It was also wonderful to hear many of the things that Steven and I feel so strongly about when it comes to research repeated over and over again amongst other organization and amazing doctors in this one room.  The importance of collaboration, sharing date and getting results quicker for our families.  It’s just gotta happen.  The way of the past that takes 15-17 years and $1.7 Billion to bring a drug to our children does NOT work for kids with rare disease (especially Niemann Pick A).  It’s time for change, which Steven and I feel so strong about.  Steven and I felt uplifted after this afternoon chat and blessed to have met this amazing group of people.  It was also just another beautiful reminder that we are on track in our own purpose and ideas with Wylder Nation Foundation.  It is easy to feel disappointed by the length of time and effort it take to get a research non-profit off the ground, but we continue to feel we are being put in the right place, meeting the right people at the right time … and that a powerful impact will be made.  Learn more about RARE Science and Dr. Christina Water’s HERE.      

Saturday Evening was the Champions of Hope Gala and a night to remember!!  Scientists, advocates, doctors, patients were recognize for their incredible efforts.  Over 500 people attended and it was also a real tribute to the Global Genes Project and all they are doing.  You would never believe sitting at this Gala that this organization started only 4 short years ago, the dream of one incredible woman Nichole Boise.  She has put together and incredible team and they have managed to move mountains …and you can tell they are just getting started!  It was a room filled with HOPE and inspiration.   Breathtaking is the only word I have for the night.  Oh, and grateful … to be amongst such an incredible group of people and all the people we had the pleasure of meeting.  The will be posting pictures of the event to their site soon.


A champion of HOPE in my book forever!



Our table was of course Wylder's Bday :)

Our table was of course Wylder’s Bday :)

Thank you Carrie for inviting us … meeting you in person was a true gift.  Thank you Global Gene for all you do for this fight.    

Wylder, we felt you everywhere this weekend.  Thank you for continuing to show us the way.  We promise to listen and continue to be your voice.  We love and miss you and will see you in our dreams.  Being in that salt water air, was a constant reminder that the beach is where my heart is.  xoxo

10 11


  1. ok, you look like movie stars in the angel wing photo! Steven looks so dashing in a suit:) I am so glad you got to go to such an amazing event! You most certainly are meeting all the right people and making this happen for Wylder and rare disease, I am so proud to call you friends. xoxo ,Chelsea

    • Mommy and Daddy says:

      I know, I know, Steven is so handsome in a suite … it happens about twice a year max (tee hee) and I love it. We are so glad to call you all friends too Chels. All our love. xoxo

  2. Cathy Johnson says:

    What an amazing event and an amazing organization. Your emotions must have been in full spectrum the whole time. You are so right, Shannon, about the need to improve the efficiency of the pathway to getting treatments and medications to patients more quickly. I work in the bio-tech industry and see first hand the length of time it often takes to get a product to market. There is plenty of room for improvement in that process for sure. Wylder Nation Foundation is sure to help pave the way in that area. So glad you got to participate in the incredible event and I echo Chelsea in her assessment of your movie-star-like photo and in being so proud to call you friends. xoxoxo

    • Mommy and Daddy says:

      I didn’t know your worked in the Bio Tech industry Cathy … then you certainly do know all to well. We feel both anxious and excited about what is to come for our our rare disease families and we cannot thank you enough for your support. It was so fun for Steven and I to get dressed up, we are both SUCH casual people it is fun to wear the heals from time to time. We are so proud to call all of you our friends as well. Without you moving mountains would feel impossible :) xoxo

Speak Your Mind