GNAO1 on 1

Thanks for tuning in to Episode 9 of GNAO1 on 1!  This time, we talk with Randy Bess and Jaeme Jensen Bess about their family out in Las Vegas, NV! 

Episode 8 features Emily Bell and Nicole Crump talking about their experience at the Global Genes RARE Patient Advocacy Summit in sunny San Diego from September 18-21, 2019.   Please listen in as they discuss their experiences, the sessions they participated in, and their general takeaways from this great conference. If you are interested, information about the 2020 Global Genes RARE Patient Advocacy Summit can be found here: https://globalgenes.org/event/patient-summit/ The 2020 conference will be held September 21-23, 2020 in San Diego, CA.  Thanks for listening!

Episode 7 features Brett and Stephanie McMorris, parents of Ian, Caedmon, and Rhys!  Rhys is a happy and stubborn 3 year old dude with GNAO1 who loves playing with his brothers in Northern California.  Please tune in to this great episode as Brett and Stephanie talk about their family, life in a small town with a GNAO1 child, and where they find strength and joy along this unexpected journey.Thank you so much for listening!

Episode 6 features Beth Cook Hutchison, the mother of Alice Hutchison!  Alice is funny and social three year old who loves playing with her cousins and going to school.  Please tune in to this great episode as Beth talks about their family, their decision to get a G-Tube, and navigating public school systems in smaller school districts - both as a teacher and as a parent! And - Beth surprised us by telling us that Firefly makes a wheelchair!  A link to the product can be found here: https://www.fireflyfriends.com/us/wegoThank you so much for listening!

Episode 5 features Kari Olavson, mother of Jacob Olavson.  Jacob was a strong, loving, and brave GNAO1 warrior, and he had many fun adventures and experiences with his amazing family.  Please tune in to this very special episode as Kari talks about Jake, her family, the adventures they all had together, rare disease advocacy, and so much more. For more information about a really special trip Jake went on, please visit: https://www.kare11.com/article/news/coon-rapids-family-takes-seriously-ill-son-on-a-bucket-list-road-trip-to-ocean/459791583Thank you so much for listening!

Today's episode features Alice Fox, Duke Fox, Emily Bell, and Stephen Bell, all from The Bow Foundation.  Please tune in as they discuss the origins of the foundation, past and current research projects, fundraising efforts, and more!  For more information, please visit GNAO1.org.  Thanks for listening!

Today's episode features Bob Davison and LeeAnn Atkinson, parents of Rita and Burns.  Rita is 6 years old and has GNAO1.  We hope you enjoy hearing about their journey as a family, some of the fun things they do and have done together, and their thoughts on raising a kid like Rita.  Thanks for listening!*Also, we are working to get our episodes published on Spotify, but approval is pending!

We are James and Nicole Crump, and we would like to introduce you to our podcast - "GNAO1 on 1."  In this podcast, we will interview different families affected by GNAO1 each week, and we will discuss different aspects of living life with a rare kid.  We hope to highlight the joy in our families, share our experiences of living life with GNAO1, and connect and make friends.  We have gained so much from our connections with this community over the past couple of years, and we hope that this podcast helps to strengthen that community and share ideas.Thank you and please stay tuned on July 22, 2019 when we interview our first family, Bob Davison and LeeAnn Atkinson, the parents of the Amazing Rita and her little brother Burns! Thanks for listening!