HCU Awareness Month

HCUAwareness2019Calendar

Week 1: 

Day 1)

Day 2)

Day 3)

Share the Classical HCU Infographic:  http://hcunetworkamerica.org/infographic

Or

Cbl Pathway and share there are 10 types of Cobalamin defects

Day 4) Share a HCU Patient Story

Videos: https://bit.ly/PatientStoriesVideos

Written Bios: https://bit.ly/HCUHeroes

Day 5)

Share your diagnosis story!

Week 2: 

Day 6) Challenge your friends to eat 10 g of protein and a normal protein shake 3 times a day #ToastToHCU

Day 7) Share a pic of an item that has the same amount of protein you can have.

Day 8) Share your daily diet record - completed.

Day 9)

Share a low protein meme

Day 10) Share your favorite low protein recipe! Bonus if you cook it and share a picture.

Day 11) Dining out, low-protein style! Share a picture of your favorite out to eat meal.

Day 12) Share a picture of what your grocery store "haul" looks like.

Week 3:

Day 13) Share - real cost of HCU: Grocery Cost Comparison

#MedicalNutritionEquityAct

Or, Some patients with HCU require injectable B12. B12 on average is $300-400 a month and most insurance companies do not cover it!

Day 14) Share a picture or video capturing all the medication you take in a day (this includes formula for those who need it)!

Day 15) Share a pic of your first pair of glasses - or a device that helps you navigate or communicate due to lack of vision

Day 16 ) Share something you wish people would understand about HCU

Day 17) #HaikuForHCU

Write and share a Haiku describing life with HCU.

Haiku poems consist of 3 lines. The first and last lines of a Haiku have 5 syllables and the middle line has 7 syllables. The lines rarely rhyme.

Ex.

Low Protein Diet
Homocystinuria
Formula is key

Day 18) Wear jeans for your rare genes

This is also a great idea for a fundraiser at work. Talk to your employer if they would back the idea of employees paying $5 a day to wear jeans for 1 week.

Learn how: https://hcunetworkamerica.org/casual-for-a-cause/

Day 19) Wear your HCU Shirt and share a pic online!

 

Week 4:

Day 20) #GoBlueForHCU

Go crazy - die your hair blue,  just paint your nails blue, or just make blue cupcakes - take a picture and use the hashtag #GoBlueForHCU

Day 21) #HCUAwareness

Share something about HCU in a public place!

Day 22) Share with one stranger what HCU is and why it's important to you!

Day 23) #Create4Cure

Create a work of art that brings awareness to HCU

Day 24) #High5forHCU

List 5 ways HCU makes you a stronger, better person

Day 25) All states test for Classical HCU, but many are still missed.

Share how newborn screening, or lack there of has impacted your life!

Day 26) Share a picture of you and a HCU buddy, or tag a friend who is of great support!

Week 5:

Day 27) #FacesOfHCU Share a picture of you saying "I am one of the estimated 1 in 200,000 people with HCU"

Day 28) #Hope4HCU Share 4 things that give you hope and encouragement

Day 29)  Share the HCU timeline - if you know other facts, let us know!

Day 30) Cutting Edge of HCU: Share about a HCU therapy that is in the works.

Revisit our Global Research Map presentation to see what's up and coming for Classical Homocystinuria!

Day 31) Your message to the world about HCU!