Thread by @Projectalive

How to stand out?

Have you ever shared a pink, red, or blue ribbon or donated during an awareness campaign? Did most of your friends already know about that disease? /1

For #rarediseases, awareness days are TRULY vital to educate people about diseases most of the general public have never heard of.

And if they’ve never heard of it, it’s hard to have sympathy/empathy, and this hard for groups to generate funding for research.

And when a disease is rare, by its nature, few are affected, so that equals:
- fewer people to start and run organizations,
- fewer friends, families, and companies to donate,
- fewer dollars to fund treatments and cures.

So today is #MPSAwarenessDay. MPS disorders only affect 1 in every 25k births. MPS II / Hunter Syndrome affects 1 in every 162K live male births.

There MAY be 5-10 boys with Hunter Syndrome in your entire STATE. Some may be undiagnosed. Some may be at end of life.

So that leaves even fewer people with the time and energy to raise awareness and funds from a public that generally knows nothing about this #raredisease.

And those people are exhausted caring for a child who is slipping away from them physically and mentally day by day.

Could you serve these families who are fighting for their kids’ lives by sharing about #MPSAwarenessDay today, RT, donate at ProjectAlive.org?

Could you take 7 min to watch and share this video, on this, our biggest day of the year?

vimeo.com/269426914