Nutrition Equity Episode 7: Cobalamin Disorders

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Listen as I talk with Brittany, parent of two children with Cobalamin G and the head of the Cobalamin Steering Committee for HCU Network America. Brittany will discuss her reasons for advocacy, her role on the steering committee, and the issues faced by those with Cobalamin Disorders.

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Chapters

1. Britnay's key goal's of the steering committee with HCU Network America (00:00:00)

2. motivation for joining the steering committee for cobalamin disorders (00:06:17)

3. nutritional needs (00:08:22)

4. difference between hydroxy cobalamin and over the counter b-12 (00:12:50)

5. cystadane oral powder medication) is needed in higher amounts (00:13:54)

6. Newborn screening (00:16:08)

7. Britnay's key goal's of the steering committee with HCU Network America (00:17:51)

8. How the medical nutrition equity act can change those with cobalamin disorders (00:18:16)

9. obstacles when striving for adequate nutrition (00:20:58)

10. colorado has ta compunding pharmacy for hydroxycobalamin but supply and demand is a problem (00:26:54)

11. How the Medical Nutrition Equity Act would Cobalamin patents (00:27:50)

12. Metabolic genetacist can help can help patients with cobalamin disorders find affordable hydrpxycoblamin (00:28:42)

13. Healthwell Foundation used to help with costs of medication (00:29:31)

14. How Grayson's death affected Britany's advocacy work (00:30:32)

15. Misconceptions of Cobalamin disorders (00:32:25)

16. bridging the gap and profiding support for the MNEA (00:35:00)

17. How listeners can help support the MNEA (00:37:57)

18. Story th describe the significance of Britany's work (00:39:36)

19. A single message for Law Makers (00:42:19)

20. advice for parents (00:43:15)

21. final ask of listeners (00:45:09)

22. fining resources (00:46:50)