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22 Nov 2021

I Allowed Myself To Be Vulnerable and Was Humbled by My Community’s Immense Response 

By Jennie, mother of a child with cystic fibrosis

As we head into Thanksgiving, I’m looking forward to some much-needed decompression and quality time with my family. But, as the parent of a 6-year-old daughter with cystic fibrosis (CF), I will also be taking this time to reach out to my community and ask them to join us in our fight against CF.

If COVID has taught me anything, it’s that major advancements can be made in record-breaking time when we put our resources behind them. I KNOW smartly-invested resources can achieve a cure in my daughter Emery’s lifetime. But, we cannot take our foot off the accelerator — even during the holidays — because CF is ruthless and it is already affecting her liver.

This week, my loved ones and I will officially launch our 11-day CureFinders Crew (CF Crew) campaign, and I’d like to invite you to join us by creating your own fundraising page. Last year, in just a few weeks, we were able to exceed our fundraising goal (by 16x!) using a staged approach aimed at educating our community on CF and the power of Emily’s Entourage to drive a cure. 

For the record, fundraising is completely outside of my comfort zone, so if you feel the same way, you’re not alone. Trust me, though, you will be surprised how many people want to help you …  you just need a little courage to ask!

Here are a few ideas on how to engage your community:

1. Identify a few “deputies” to help you spread the word and share the impact that CF has on them. Think aunts, uncles, cousins … anyone who can share their connection with THEIR network and help you expand the reach of your fundraising campaign. This was a critical part of our success last year; over half of the donations came from people who didn’t personally know Emery!

2. Have your deputies share “teasers” on their personal social media pages a few days before you officially launch your fundraising campaign. My deputies plan to share some of their own personal stories about Emery and how EE is so critical to finding a cure for her. In the meantime, I send emails and texts to my own network because I’m not on social media.

When I asked one of our deputies about how she approaches her social media posts, she explained that she likes to use a picture of her and Emery to serve as an anchor around which to share a story that will resonate with everyone (e.g. a photo of her and Emery flying a kite at the beach in their matching outfits).

Create a post around the sentiment and share a personal story of why that moment was so special. Speak from your heart and write about what moves you. Your voice will be powerful in opening people’s hearts. Share your favorite hashtags: #ILoveSomeoneWithCysticFibrosis #MoreGreatDaysPlease #It’sNotJustAboutKites #EmilysEntourage

3. Share more information about CF and Emily’s Entourage. Over the next few days, we will continue to post teasers on social media and via email and text. I plan to share this very impactful video from EE. (I. Love. This. Video.) And I’ll share statistics, like this graphic below that was featured in EE’s 2020 Impact Report. I think it’s really important and responsible to show the financial stewardship of our community’s investment.

4. Pick a day to “launch” your campaign and share your fundraising page. (Here’s my fundraising page if you need some ideas.) We plan to launch our campaign the day before Thanksgiving, but it can be any day. That evening we will count our blessings and feel very loved because humanity will surprise us again. And for this one day, we won’t let CF make us feel isolated.

My family and I are so grateful for the opportunity to partner with such a laser-focused organization to help drive this cure. If we raise only $1, it will be worth every minute spent on this. But, I think you will find, people are generous. They really want to help. And people are quite grateful for their own fortune (whether health, financial, etc.). They want to share that fortune and be part of a bigger calling.

I hope you allow yourselves the chance to feel a little vulnerable and be moved by the generosity of people. It will change you — for the better. 

Create Your Fundraising Page

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How It Started: A Look Back at the Launch of EE’s Champions Program
Meet Our 2021 Drive-In Gala Champions
The opinions stated by our guest contributors reflect the experiences and thoughts of the author alone. Our publication of these pieces does not reflect Emily’s Entourage’s endorsement or suggest a position on those opinions. The content on this site is for informational or educational purposes only and does not substitute professional medical advice or consultations with healthcare professionals.
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