Global Genes Project

Steven and I head out for Newport, California tomorrow.  We are going to the Global Genes Patient Advacy Summit. 


On Friday we will be attending seminars and studies all day titled  From Symptom to Cure: The Journey of a Rare Disease Advocate ~ Equipping Patients to Make a Difference

This is Global Genes project 2nd Annual Patient Advocacy Summit and the first for Steven and I.  We are looking forward to the new faces we are going to met and all there is to learn.  The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful activists and to provide the discussion, insights and tools to move down this advocacy path, equipped and prepared.  The summit will offer practical advice, case studies and networking opportunities as we learn from one another.

This is everything we will be learning more about:

  • Learn how to get started: obtain 501c3 status, write grants, leverage PR effectively and utilize social media to spread your message.

  • Collaboration: Understand how to successfully work with other rare disease stakeholders, patient advocates, the FDA and other government entities.

  • Learn the importance of patient registries, the different types of registries and how advocates can support them.

  • Explore the role of foundations and advocates related to scientific discovery and drug development.

  • Gain a broad understanding of the scientific process, including diagnostic and research methodologies and collaborations with academia and industry.

 It has been quite a journey and learning curve for Steven and I as we continue to be in just the beginning stages of getting Wylder Nation Foundation off the ground and projects started. We are very much looking forward to all that this weekend will have to teach us and continue to help us with as we move forward on this journey. We also got a very sweet email from Carrie Ostrea the Director of advocacy at the Global Genes project a few months back inviting us to be her guest at the Tribute to Champions Gala on Saturday night. What an honor. It will be a night full of laughter and tears where we will meet other Warrior’s like Wylder James and here of their stories of hope, and Dr. Stephen Groft, Director – National Institutes of Health, Office of Rare Diseases Research will be honored. Our sweetest Wylder James will also be a featured patient on Saturday evening.  This will be a very special night that we are looking forward too. Carrie is not only the Advocacy director at Global Genes but a rock star momma who created her own successful non-profit in honor of her beautiful daughter Hannah, who battled Gauche Disease (which is another similar lysosomal storage disease like NPA). Learn about Carrie’s amazing non-profit Little Miss Hannah Foundation HERE


 We are looking forward the summit and teaching others about the happenings of Wylder Nation Foundation.  “Hope IS in our GENES.”   Wylder James, we love and miss you … see you in our dreams.  xoxo



  1. Enjoy the weekend! I’m sure you will learn alot.

  2. Cathy Johnson says:

    Wow, Shannon! What an amazing time this will be. Can wait to hear all about your experience.

    • Mommy and Daddy says:

      Thank you Cathy! Day one was already a success. No conference …
      But lots of waking and talking on the beach with my honey. Conference tomorrow, here we come! Xoxo

      • Cathy Johnson says:

        Ooooh – walking and talking on the beach with one’s honey is just the best! And you two seem to do it soooo well! :) xoxoxo

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