Cobalamin Steering Committee

Mission:

The Cobalamin Steering Committee will come together to provide advice on how to best support the needs of the Cobalamin Community.

Goals/Responsibilities: 

  • Provide ideas to HCUNA on what would be helpful to the Cbl community, e.g through periodic calls with executive director and other board members as needed
  • Act as an ambassador to new Cobalamin families - providing them with information, tools, advice and encouragement
  • Help draft, review and provide feedback on content  and materials for new resources being developed
  • Help serve as or organize volunteers as needed for events
Tracy

Tracy Brynelsen lives in northern Minneapolis suburbs of Minnesota with her husband, AJ, and their daughter Lydia. She entered the HCU world when Lydia was diagnosed with CblF following an abnormal newborn screening in December 2017. Outside of being a mom and rare disease advocate, Tracy enjoys photography, iced coffee, and warm weather.

Misty

Misty Garcia lives in Dallas, Texas with her husband Gil, and their daughter Sienna. Sienna is 20 years old and has CblC. Misty likes to read, watch movies and spend time with her family.

Dana_family_pic

Dana Hunt lives in the Kansas City suburbs of Kansas with her husband, Darren, and their two children, Ethan (16) and Carson (11) who has CblG. She loves being a mom, teaching dance, and spending quality time with her family. While this journey has been difficult, she reminds herself to live, laugh & love every day.

 

brittany2

Brittany Parke lives in the Denver suburbs of Colorado with her husband, Robert and three children, Alexis (13), Riley (3) and Grayson (7 wks). While their family is just beginning the journey with Grayson who was diagnosed with Cbl G, they have been involved in the rare diseases community since the birth and death of their son Drew in 2011. Brittany loves to read, run and spend time outside with her family.

 

annandgig

Gig (George) and Annette Settle live in the Harrisburg suburbs of Pennsylvania with their son Adam (19) who was diagnosed with CblC deficiency under the then new newborn screening. They believe Adam was the third child diagnosed prior to the onset of serious medical complications. Adam is the youngest of 8 of Gig and Annette’s children. Adam’s story is being told in a book for children; No Day Wasted: The Adam Settle Story. The expected publishing date is November 2019. The Settle family enjoys mission work in developing countries.