HCU Awareness Month

hcuawareness month banner
HCU Awareness Month Activity List

Day 1)

Day 2)

Start your fundraiser: Get started here

Day 3)

Share the Homocystinurias Flow Chart

 

Day 4) Share a HCU Patient Story

Videos: https://bit.ly/PatientStoriesVideos

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

Day 5)

Share your diagnosis story!

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.

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!

 

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!

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 presentations to see what's happening!

Day 31) Your message to the world about HCU!