One day left until the Great Strides walk for Cystic Fibrosis

The day has arrived! In less than 24 hours, we will walk in the Cystic Fibrosis Great Strides fundraiser.

We’ve worked hard over the past four months, raising awareness, support, and funds to help the CF Foundation and researchers develop better treatments that not only extend life of CF patients, but also improve our quality of life.

Awareness

I’ve posted videos online for the past year, where I discuss my current state of health, what’s going on in our lives, and basic information about Cystic Fibrosis. My health has changed to the point where I need much more medical intervention, needing hospitalization every 5-6 months or so, and I feel that sharing my experiences could potentially help others get through their challenges.

Last fall, during the sickest point of my life, as I spent nearly three very uncertain weeks in the hospital, I chronicled my stay, recording videos using my phone and posting them on Facebook and Youtube. To some, it may seem attention-seeking, but creating these videos for public consumption served very specific purposes – to update all of my family and friends at once, and to share what it’s like living with Cystic Fibrosis on a daily basis.

The view from my bed for 20 days.

The view from my bed for 20 days.

It was during this marathon hospitalization that my sisters created the Great Strides team now known as “Toni’s Tigers.”

We took on the risk of vulnerability and opened our lives to put a face to the cause, and people have responded by opening their hearts. It felt really amazing when family, friends, fellow alumni from high school and college, former co-workers, colleagues from my acting days, and people I didn’t even know well, shared our story on their own Facebook pages. People talk as lot about “awareness”; this is awareness in action.

A Team to Help us Carry the Load

To our delight, a team of 15-20 people will be walking on the day of the event. Within a week of creating the Team, we already had a list of people who committed to walking and raising their own awareness and fundraising campaigns. They looked ahead to a weekend morning months into the future, and said, “I’ll be there”.

team

We’ve arrived at the point in our lives when we just can’t carry CF ourselves, that all we had to do is ask, and people literally lined up to help. Look at that list!! How exciting is that??

Stumping for Bucks

We took on the challenge of setting and achieving goals. It is never easy to ask someone for money. It was a really scary thing for me. When I first registered to do the walk, I had to fill out a line that asked me what my fundraising goal was. I thought to myself, what would be easy? Surely, among 400 Facebook friends, I could raise $200! Then I thought, what amount would be a “dream” to raise?

In a state of hope mixed with moxy, I filled in the line…$1500. We sent emails to all of our friends and family, asking to share our story, walking for the team, buying a t-shirt, donating money, or raising their own funds.

Every few days, I’d receive emails that someone else had donated to our event. Each time, I’d call Ken (at work) and tell him the news. It was so exciting!

As of this morning, we had raised $1600.

In addition, we created and sold team t-shirts. Most of those who will be participating in the actual walk on Saturday will be decked out in these bright orange shirts:

Screen Shot 2013-04-03 at 6.26.21 PM

Two local businesses also sold “pin-ups” – printed pieces of paper where someone can sign their name, write down a nominal donation (usually $1 each), and tape the pin-up to the wall. You can most often find these type of things in grocery stores, near the checkout registers. It’s a great way not only to raise funds, but more importantly, to spread more awareness.

So the grand total that Ken and I have raised, thanks to friends, family and help from some local businesses, we have raised:

Ken and I together have raised $1900.

$1900.

The Day Arrives

Tomorrow, I get to exchange these…

My "skid-proof" socks they make me wear in the hospital.

My “skid-proof” socks they make me wear in the hospital.

…for these:

Electric blue with amazing arch support.

I cannot wait to share photos from the event tomorrow. Thank you to everyone who have supported us, and who will continue to help us carry this load. We would not be here without you!

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