Saving Case … and Friends

Posted Tuesday May 05, 2015 by Melissa

Saving Case … and Friends

Nothing is constant except change, they say, and that is true in our life as well.

When we started this journey over six years ago, we had no idea where it would lead us. Where it would lead Case. Where it would lead our mission as a family.

And even when I started writing this blog in January 2011, the sole mission was to give information to our community and to those in industry and other places that needed to better experience what life inside a clinical trial, this trial, was like.

And sometimes even more so, to give hope.

Being a newly diagnosed family in 2009 was filled with a lot of things, but hope was only on the horizon. It had yet to be realized. So I always wanted newly diagnosed families especially to see that there was hope for their child, even when it felt like they had fallen into a deep, dark pit.

I didn’t envision a foundation. Even when others assumed we had one.

I am allergic to drama.

Intolerant of politicking.

Incapable of slow bureaucracy at the expense of swift disease.

That perspective is what took us years to decide to form a foundation. And only when we accepted that a foundation was the only way to accomplish the goal in front of us did we act.

It’s all about saving kids. Period.

I will always, always, see my actions through that lens.

And so it goes….

SavingCase has become the non-profit Saving Case & Friends – a Hunter Syndrome research & advocacy foundation.

There are many rare disease foundations and even many in the Hunter Syndrome community. Every one is valuable. We all play a role even when our roles, or our perspectives, may differ.

This summer will be a busy one for our organization. Onboarding new board members. Launching an exciting fundraising campaign. I can hardly sleep at night, I’m so stinkin’ excited.

I will live and die by the motto GO BIG or GO HOME.

So I hope that you’ll join us in our long-term vision for research and advocacy. I hope that you’ll GO BIG with us. Because we are most certainly not going home. Sign up for our newsletter to get updates about what we’re doing and how you can help. Donate now.

The motto of some of our board members for years has been the following, and we intend to live by that.

No shame. No fear. No pride. All heart.

 

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