• 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
• If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country.
• Source https://globalgenes.org/rare-diseases-facts-statistics/

We have wondered through the years what good could come of uniting forces for the benefit of all Rare Disease Patients.  And slowly we are starting to see charities connect for the betterment of the big picture.  The PTEN foundation has teamed with a patient with Duchenne Muscular Dystrophy, to raise funds to benefit both causes, and for those that remain undiagnosed.

Please consider supporting this cause.  There is important work being done for all.

(FROM THE PTEN FOUNDATION FACEBOOK PAGE) Exciting News!!! We have a team of 12 sponsored cyclists that will support Ride4Gabe getting the word out about ‪#‎Duchenne‬ Muscular Dystrophy,‪#‎PTEN‬, and all Rare Genetic Illnesses with unmet medical needs. This is huge. You can help, please share this and our team go fund me link often. 1/2 of all proceeds will go to our PTEN Foundation. 

HTTPS://www.gofundme.com/wesupportride4gabe

THEY GET IT!  They understand, “We’re all in this together…”

I was never a huge fan on Disney’s High School Musical.  I’m not really sure I ever sat down to watch, and I likely judged without thinking.  But I’ll be the first to tell you first impressions can be flawed.  And I’ll also tell you that I ‘get it’ on a much more grand scale after last night.

For us it started with a friendship that bloomed between Meghan and one of the most compassionate young ladies I have ever met.  They’ve known each other forever, but only in recent times have they come to know each other as “friend.”  They spent time on stage together through middle school productions, and it was through this young lady we learned of a Summer Theater opportunity offered.

We are a self-sustaining program sponsored by the Staten Island Mental Health Society whose mission is to promote positive mental health through the arts.  We are currently celebrating our 52nd Season of bringing live theater to children and families. 

Looking for a summer change of pace, and not knowing at all what to expect, I dropped Meghan off to the Snug Harbor dance theater where these forty-five or so 9-18 year olds would spend the next 8 days generating a full “junior” production.  I walked into the back of the room for the parent meeting at the end of the first day, and I watched the children, and young adults, attentive on the floor.  This was July.  There were a lot of them.  Their respect had already been earned by the staff.  This was a “no-nonsense” set up.  We received out parent information and as we left to head home, my girl said very little about the day.  She told me she liked it though, and this was a big win.

Some of the children in the program were new, like she was.  Others had been in the program for years.  And somehow it seemed to not matter.  Ages, genders, styles, personal interests, there seemed to be very few alienating factors.  Everything seemed to be joining them together.

Each day pick up was a little smoother.  Names were a little more familiar.  Identities seemed a bit more well-established.  By the time we came home last Friday, it was hard to imagine they had only spent a bit more than 24 hours together.

10-4 for eight days they sang, they learned, they laughed and they grew.  They focused and learned that they needed to keep …

 “Just keep ya head in the game
Just keep ya head in the game

And don’t be afraid
To shoot the outside “J”
Just keep ya head in the game…”

They became a team.  They became a group of high energy youth, who each possess their own strengths.  Instead of trying to outshine each other, they learned they would shine best together.

Last night before we got into the theater I looked around.  I saw photos from the dress rehearsal, parents and children I knew from other walks of life, and family and friends there to support my girl.  I am an over-thinker.  I always will be.  It was hard not to think one week from then she’d be, God-willing, on my couch recovering from another biopsy.  But, that was not about tonight.  Tonight was about #beatingcowdens by being part of a group, by being one of “them,” and by being on that stage in a very present way.  So I cleared my head, and I watched.

Sneaking in a Proud Mommy Moment 🙂

I watched a play about finding your own identity, supporting each other, not being linked into your “label,” following your passions, learning trust, and forgiveness and so much more.

I never was a fan of “High School Musical,” until last night.  Last night I realized that there was such a timely, deeper meaning.

Truly, “We’re all in this together…”  and in the words of Ben Franklin, “We must all hang together, or most assuredly we will all hang separately…” It’s time.

It’s time we stop seeing labels, and who we think people are.  It’s time we start learning who they really are.  It’s time to start celebrating the good.  Because there is much good to be celebrated.

On an island knee-deep in a very real drug crisis, hitting every single walk of life, I am filled with gratitude for SICTA, for giving children something to focus on, and for instilling a positive message of self-worth and deeper meaning.  I can not name all the adults who touched my girl’s life this week for fear of leaving someone out, but YOU, YOU are leading by example.  I  am full of gratitude.

Life #beatingcowdens is riddled with twists and turns.  You gave us a brief respite.

And, as the lovely young lady took Meghan from the steps of the theater and invited her to the diner “with the cast,” so many things came together.

“We’re All in This Together,”  indeed.  THANK YOU #SICTA

“1,2,3…BRAVA!”