Thank you!


Difference is always celebrated in the community of a rare disease family.  Often called zebras for their unique traits, we embrace differences here.

Kelsey mentioned that she had a new song in her head.  She wrote the words for me and has no idea how remarkable they are right now for our world.  Children are our future and our future looks bright tonight…

Still a work in progress, but the current chorus:


“Difference is love.

Difference is pure.

Difference is power.

Difference is a thing that can never be taken apart.”

Be brave and celebrate your difference today.

Choose Love

It has been hard to find the words.  It has been hard to face the day in 2020.  Masks are worn and isolation is felt all around.  Yet as America slowly reopens, one angry thought overshadows even a pandemic.  An angry thought was felt nation-wide this week and our hearts feel it.

In the first week of June 2020, we are saddened.  We are vulnerable.  We have fear and anger at times in our hearts.

Over the course of these recent days, many families and individuals have come to mind.  Scarlett Lewis is the most recurring voice because she personally knows the pain caused by an angry thought.  Her inspirational message and social-emotional program were developed because of tragedy from an angry thought.

When Scarlett speaks, she always points out that her son, Jesse, lost his life as a hero at Sandy Hook Elementary because of an angry thought.  Scarlett has reached a global scale with the Choose Love Jesse Lewis Movement.

In the first week of June 2020, let’s think like Scarlett.  Let’s Choose Love.   If love is all we need and our actions are driven by love or anger, why can it be so hard to Choose Love?

Scarlett, keep spreading your message and inspiring others to Choose Love.

Reflect.  Hope.  Be Brave.  Choose Love.

Wicked Warriors, Stand Strong

A few months ago, a philanthropic group of women were on the soccer fields with news of an organization that ended abruptly after a decade of success, love, and teamwork.

Stronger and braver now than in the past, this tremendous group of warrior women could not be stopped!  They formed a new alliance and stand together as The Wicked Warriors to make a difference in their community.

This week, The Wicked Warriors voted on their inaugural charitable selection.  Though we are in uncertain times and the season of dragon boat racing may not commence as planned, these warriors voted and selected our organization to begin their quest to make a difference.

We are grateful that such a brave and dedicated group of women selected us.

Thank you for your support and for showing us, love.

Be Brave, Wicked Warriors!

BRAVE Redefined in COVID 19

This weekend, a BRAVE nurse had the idea to utilize BRAVE bands in her day-to-day work on the frontlines.  After she picked up the bands, Kelsey brainstormed the many other BRAVE men and women who work on the front lines daily.

We counted the amount of BRAVE bands we had remaining, and though it was a mix of colors and orders, we had exactly 100.  Kelsey decided that she wanted to donate BRAVE bands to those front line workers.  After two calls to ShopRite, the first deliveries are set for today by President, Mary Wagner.


Thank you to all who work and serve others!

Distant Welcome

Front line providers and those working in essential services are our national heroes right now.  We salute, admire, and respect you all.

America’s heroes also remain on the front lines dedicating their service to our nation.  Our family was humbled to honor a year of service away from home in these strange times.  Our hometown hero was welcomed back with two streets lined with the simple message, “Welcome Home.”  Not a dry eye watched from afar…

The extended family stood from afar waving flags and proudly singing “Born in the USA.”  @brucespringsteen   In 2020, the Boss sings, “I woke up this morning just glad my boots were on,” in Western Stars.  We were born in the USA and are lucky to put our boots on…


Be Brave Today

In the midst of so much uncertainty around the world, we attempt a pause to embrace our gifts and hug our blessings a bit tighter.

The words that continue to scare us are those which say, “Only the vulnerable will be at risk.  Your only is our everything.”

Please heed the warnings.  Please distance.  Please keep safe and strong.

Our global normal is changing daily.  Schools are closed and the toilet paper is sparse.  In times of despair, we often see communities come together and lift each other up.  Doing so from a distance is unique.  Digital platforms allow for daily check-ins and lines of love to continue.  We are grateful for those.

Today is a day to be brave and strong.  Have the courage to stay away and be uncomfortable within your walls.  A friend of ours once declared that March 18th would be Brave Day.  Little did we realize how brave we would need to be today. #ThisisHowIBrave

Our everythings are too important for risk due to a lack of understanding.  #Strongertogether #BeBraveToday

How will you brave today?