June 20th is World FSHD Day



Post by Chris Carrino

June 20th is World FSHD Day.

A day of awareness for FSHD, to show we are united for a cure.

However, for those of us affected by this disease, June 20th is simply known as  – Tuesday.

There isn’t a moment of every day that I’m not acutely aware of FSHD.  And ever since I went public with my condition and started the Chris Carrino Foundation for FSHD, I am consumed by how to spread awareness and raise money for a cure.  


What’s the point of awareness?

Awareness is kind of an abstract thing that’s hard to quantify.  But in order to find a treatment and a cure for FSHD, we need to get people to care.  And they are not able to care about something unless they’re aware of it.  That’s why it’s important to tell our story to as many people as we can.  

In the hodgepodge of all the important (and not so important) causes that overwhelm us on social media today, our story will fall on many deaf ears.  But it may also find the right person who will be willing and able to help in ways important to the cause.  

For others, our story will give hope, hope for people dealing with this disease who need to know someone is fighting for them, caring about them; feeling that they are not alone.


What do you need to know about FSHD?

In a speech to the audience at our annual dinner a few years ago, I spoke about a magazine article I came across entitled “How To Be Gracious”.   With all the help and generosity I’ve encountered since beginning the foundation, graciousness is often on my mind.  

The article used the example of someone seated in a conference room or at a table in a restaurant.  Someone new enters the room and come over to join the group.  The gracious person, according to the article, rises from his or her seat, extends their arm for a nice, firm handshake and smiles.  

Those three actions are awkward, difficult, and often impossible for someone with FSHD.  Please think of how many times you do those things without thinking and then consider how different your life would be if you could not easily perform those simple gestures.  

By helping us find a treatment or cure for FSHD you are literally getting people back on their feet, helping them get a grip, and putting a smile on their face.


How can you help?

According to researchers I’ve spoken to, FSHD research is moving rapidly.  Great breakthroughs have been made over the last decade and scientists have a target and thus can see a path to a treatment.  That’s why it is important to keep funding their work.  

We currently have a group of cyclists riding their bikes across the country to raise awareness and money.  The Coast to Coast for FSHD Bike tour (#C2C4FSHD) is touching the FSHD community of researchers and patients from Seattle to Brooklyn in an unprecedented effort on behalf of FSHD.  To find out more and support our riders, got to www.C2C4FSHD.org.  Click here to meet Brooke, and see the kind of impact our riders are having on the FSHD community.

If you’re in the New York area on July 20, 2017, join us for our 7th Annual Dinner/Dance at Russo’s on the Bay in Howard Beach, NY.  It’s a wonderful night where people come together to help fight this disease and have a great time in the process.  For tickets and information for this and all upcoming events, please log on to www.chriscarrinofoundation.org.  

All donations, large or small, are greatly appreciated and go directly to FSHD research.  


What’s next?

On June 20th, as you enjoy a nice ice cream soda (It’s also National Ice Cream Soda Day!) please help us tell our story.  Share our posts on social media.  Change your avatar to the “World FSHD Day” logo available on our Facebook page and twitter account.  Tell your family and friends about us.  If you have the means, please make a donation.  

The important thing is to remember us beyond June 20th.  Hopefully, while you’re enjoying a nice homemade waffle on June 29th (National Waffle Iron Day), you’ll still be considering how you can help change people lives.  The gracious and grateful people living with FSHD.


Join us for The Chris Carrino Foundation Virtual Gala on October 22, 2020!  REGISTER TODAY!