Why We Fundraise

Strides for Sienna is gearing up for year three of Great Strides; the largest fundraising event hosted by the Cystic Fibrosis Foundation.  Our team has raised close to $30,000 for the CFF over the past two years, and are hoping to add another $10 – 15k to that number this year.  From the bottom of our hearts, thank you to all that have stood beside us, walked with us, and supported us on our mission to raise awareness on Cystic Fibrosis and funds to pave the way for more research around this orphan disease.

I know it’s annoying to always be asked to donate your time or money and that we certainly aren’t the only ones asking.  I know donating to a cause that doesn’t personally affect you just isn’t on your priority list.  I know that you may feel pressured or obligated to contribute when you see our cries for help.  But - I don’t want that.

If you are a parent, put yourself in our shoes for just a moment.  One quick thought on what life would be like if YOUR child had a life threatening illness.  One that had to be managed day in and day out, where medicines and medical equipment were part of your ‘norm.’  That there was a real chance that YOU, the parent, may outlive that precious, sweet, and loving child of yours.  You know you would do everything in your power, in your being, to change that outcome if you could. 

And if you aren’t a parent, imagine your best friend, your spouse, your sibling fighting an incurable disease.  One that you know will eventually take them away from you.  One that will debilitate them over time until their body fails them. You know you would do everything in your power, in your being, to change that outcome if you could.

Now, you can turn that thought off.  But we can’t.  We live that thought, that moment - each and every minute of every day.  And we to want to do everything in our power, in our being, to change the outcome. Because as a parent, it is our responsibility to protect our children. To keep them safe from harm.  But this one is out of our control. We can't protect from what's inside. Can you imagine, knowing your child is sick but not being able to make it better? It's a parents worst nightmare.

And that’s what makes us fight.  We fight for Sienna.  We fight as a family. We fight to let her, and others with CF, know that they are not battling this disease alone. Because, so much is out of our control with this disease.  We didn’t ask it to play a part in our life.  We can’t foresee when her health will decline.  We don’t know if the medicines and treatments will add a year to her life or 20. 

What we DO know, is that awareness = money = research = new medicines, therapies, and {hopefully} a cure. 

What we DO know, is that decades of raising awareness and funding has made remarkable strides against battling this disease and our children are now living longer because of it.

What we DO know, is that instead of hoping our daughter lives to see kindergarten, we can now hope that she lives to see college, marriage, children…grandchildren.

The disease itself hasn’t changed.  So, what has? Knowledge has. Preventative treatments have. Medicines available have. Protocols have. These changes have stemmed from decades of research.  And research just doesn’t happen unless it’s funded. 

So, thank you.  Thank you to the families that have walked this path before us.  Thank you to those that have dedicated their life to research in this field.  Thank you to those that have chosen to fight this battle along with us by showing empathy, support and love.  Thank you for justifying that our fight is worth a few of your hard earned dollars.  Just, thank you.

Bonus fun fact: Did you know that the Cystic Fibrosis Foundation was founded in 1955 by a group of parents? Their goal was to advance understanding of this little-known disease, to create new treatments and specialized care for their children, and to find a cure.