What can you do to help?

Small acts, when multiplied by millions of people, can transform the world- Howard Zinn.

I was asked to provide insight into how can our community members can get involved to help CF. My questions back to everyone are; where is your passion, what are your strengths, or what do you like to do that brings joy in your life and I can find something to match as best as I can.

There are so many different things that you can do within your comfort zone that can add up to be so much. Me personally, I am legit all over the board. I haven’t found my one thing that I can ‘brand’ myself with as I am trying anything and everything. I will walk through my personal CF resume, if you will, and if there is something that excites you, you have a passion for, you would like to learn more – let me know. The biggest ask that I have from everyone, is to spread the word of what CF is. The number of people that have it are so low but the voices are becoming louder, there is a social media presence and we can’t rest until there is a Cure. So, buckle up and here is what I have been and working on.

CF Advocacy; Being able to meet and connect with our elected officials and telling our story. That’s it – not scary. It’s telling a story – if you are a story teller this is right up your alley. The struggle that I/we have with this is that only so many different areas within the state had/have dedicated CF Advocates. So when different legislation comes down the pipeline that is open to public forums, only the elected officials in my area here from me on the issues and there are quite a few areas that are missed. If you’re looking to help; you could become a CF Advocate in your region or area to help tell the story and be a voice. Most of the time, it’s an email. Super easy.

CF Awareness; reaching out to local organizations and just asking! I recently messaged a local drive in restaurant asking if they have community awareness nights. They said they never had anyone ask the question and wondered what I had in mind! Bam! The date is set, I just need to finalize the details. One simple question. I have some ideas of things we can do for an awareness ‘give away’ piece for this awareness night, but that’s my passion and excitement. I like to be creative and try something new. The goal is at least one person learned something new at this awareness night. If you have these connections and they are willing to have an awareness night, post a poster, have a scrolling ad or something with CF information on it, let me know. We can work together on what it looks like and what you need. More to come on the Drive in Fun night :).

CF Fundraiser: This one is a bit more tricky to get up and running but once you’re there it’s a piece of cake. The CF Foundation has very specific hoops you have to go to through to protect their non profit designation (which I get and respect) and the state office is willing to make all the arrangements and phone calls. All you have to do is ask; hey do you guys have Non Profit nights? If they say yes, grab the specifics and send it over and I can work with the State. (Otherwise I can provide Lola’s information if you are that driven). I am in connection with Megan as Texas Roadhouse for a gift card drive again. Way earlier this year so we can take orders in October, you’ll have the cards in hand at Thanksgiving so you can give them as Christmas/Holiday gifts. 🙂

CF Social Media Cheerleader: If you are still trying to figure out where you are in the CF journey, a cheerleader is so important. Sharing our posts or following along in the research are all small/easy but very impactful ways to spread the awareness. Just knowing that you are actually reading this far into my blog and cheering us on, knowing that you are following along in our journey and sharing the updates is my inspiration. One thing I have also done is liked all the different CF State chapters; New York, Florida, etcs, on Facebook so I can see what they are doing and which research they are promoting. I am also following a lot of different CF’ers on Facebook, Instagram and Twitter as well and I like a lot of their posts and benchmark to share with you! I have also been a guest blogger on the National CF page as well. If you are a writer and would like to provide a blog here to us or would like to contribute on a bigger stage, let me know!

CF Village member: there are a few things you can do that are not public but more impactful to us -It’s just being there. The vests treatments can get boring and having someone else sit with him and just supporting him as we go through them is huge. It shows that it’s just how it is and everyone respects it. Its scary – I totally get it. It’s a medical device that is new, legit shakes the crap out of him, and it’s loud. Once you get through a treatment with him, it’s just second nature. By having more people understand and support him will set him up for success in the future. I’m sure we’ll have the fights of him not doing it but as it sits right now, we are pretty fortunate. If you’re looking to help here, our door is always open if you would like to hang out with him.

CF Great Strider: so 2019 was the first year I was on the Great Stride committee and I can tell you that we need more help here. It’s a huge untapped potential to really grow this walk into something huge. We need help with social media presence, spreading it by word of mouth, asking for donations, getting more people to participate in the run/walk and helping the day of the walk. Since we just had it in May, we have some time but if you are great at helping organizing a one day event and would like to help – we are always looking for more ways to grow this!

So that’s my CF Resume. The Milwaukee office always hold a ton more activities and things to do; wine tasting events, Galas, mountain climbing, etc. that some day I would love to join them but for now we are holding down the Fox Valley. I’m sure there are a million other things that I could be done to help find a cure and as I hear about them I can for sure spread the word and if there is something you are interested in learning more about, please let me know.