rare disease day & the common teenager

Rare Disease Day is always on the last day of February each year. Duchenne Muscular Dystrophy is one of many Rare Diseases affecting approximately only one in thirty five hundred boys born the world over. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

In honor of this day JB’s Keys is pleased to sponsor an event put on by fellow Massachusetts organization, Jett Foundation. We are proud to be joining other sponsors such as Pfizer, Vertex, Solid Biosciences, Casmir and FibroGen. This is Jett’s 4th Annual Rare Disease Day event.

This year, they will celebrate this special day with community ambassadors, Duchenne medical professionals, rare disease researchers and more who will be sharing personal stories about persevering through and overcoming challenges caused by COVID-19.  

We hope many of our supporters will join Jett TOMORROW AT 2PM. 
For more information visit this site . 

As I continue my attempt to keep up my blog posting I used Rare Disease Day as a jumping off point as I sat down to write. I first went to thinking about how isolating and you know, rare, living with a rare disease can be. But, then I got stuck on a fact I read on the Rare Disease Day website.  One in twenty people will live with a rare disease at some point in their lives. That makes it fairly likely that an individual will live with one of the over six thousand identified rare diseases. It should not feel isolating as there are many people living with a rare disease.  It is in fact common to be living with a rare disease.

All those individuals living with rare diseases are so much more than the diagnosis they have. They are not really rare individuals themselves, they just happen to have a rare disease. They are the same as people not living with a rare disease. 

There is certainly a list of items that makes JB unique because of Duchenne. These are differences I have already shared like the stretching, AFOs, cough assist, power chair, bi-pap and all of that. But, that is just a small part of who JB is. I can not deny that Duchenne permeates through most aspects of his daily life but more than anything he is just a typical, common and ordinary teenager. 

What does a typical, common and ordinary teenager look like? Well, it includes an addiction to xbox, a heightened sense of competition, a use of explicit language and strong complaints about school work. 

It isn't all bad though. It also means that JB is starting to find places he feels he belongs and what he is passionate about. That means on the mountain in the tetra ski.

It also means on stage performing which leads me to a shameless plug! 

JB and his friends have been working since September filming a musical movie, Zoomsical,  from their homes. From what I have seen and heard it should be awesome! It includes performances of some of our favorite songs from hit musicals. It is a funny, real, foot tapping show. The show’s length is about 1 hour, and is appropriate for all ages!

If you are local you can join JB  in person at the Drive-In for the World Premiere this weekend.

Catch the show at one of these three times: 
-Friday, February 26th at 7:30pm 
-Saturday, February 27th at 5:30pm or 7:30pm
 
If you are not local you can still catch the show by streaming the show starting on the actual Rare Disease Day, Sunday February 28th.  

For more information, to see the trailer and to buy tickets click here! 

On this Rare Disease Day I hope you can not only join tomorrow morning recognizing the day with Jett but also celebrate a common teenager who has found a place of belonging in the theater.