Driving Miss Desi

04/06/2024

Questions about Team Driving Miss Desi T-Shirts:
Team DMD ‘chauffeurs’ watch your email this weekend-you are getting an order form to get yours!

Final order for shirts goes to print on Monday.

*I will order a couple extra- priority for shirts goes to Team DMD ‘chauffeurs first! 🚙 💨

Not a chauffeur yet:

http://fightcf.cff.org/goto/TeamDrivingMissDesi

Click ‘Join this Team’
—-> In-Person OR Virtual

Thank you for Driving Miss Desi to a Cure with us! This years shirts are SUPER CUTE!!!!!

We want you to join us! Our team is walking in Great Strides to make a difference in the lives of those living with cystic fibrosis. Sign up today.

04/04/2024

TODAY is 🚗 Sign On Day 🚗 for Team Driving Miss Desi!
Please read this personal invitation from Desi...

Our Tailgate/Walk for Desi is exactly ONE month away! We can't wait to spend the morning with you!

A few folks have told me that can't come that morning...We understand! You can still be a part of the bigger picture:
Sign up to be a 'Virtual Walker' and walk in your neighborhood for Desi (walk whenever you want)!

Click the link-
-> Join this Team
--> In Person Walker OR Virtual Walker***

***When you sign up--at the end it will give you the option to list family member names- please include each of those names. Desi LOVES seeing her friends names each time we look at the page! 💜💜

Desi is becoming more and more 'in-tune' with cystic fibrosis and what it is but also what Great Strides is. This day is one of her MOST favorites.

It's more special having each of you be a part of it! You are so much of the joy this day brings!

GOAL IS 20 NEW MEMBERS TODAY!
http://fightcf.cff.org/goto/TeamDrivingMissDesi

02/19/2024

Huntsville! 🐰Ordering is NOW OPEN!
Wake up Easter morning to eggs filled with Easter surprises already in your yard!
https://passion.cff.org/eggmyyardhsv

Currently open to zip codes: 35801 35802 35741 35763

We look forward to this tradition every year! This is our 6th Annual Egg my Yard event. Thank you for sharing in the excitement with us.

Every single dollar goes to the Cystic Fibrosis Foundation the memories made Easter morning are yours to last a lifetime. 🩵

HUNTSVILLE FRIENDS- Share! Tag Friends!

Easter will be here before you know it!

06/07/2023

Moments I want to remember: the times that the pulmonologist would return only to visit and play games.

The amount of times her nurses would play Over Under Ostrich and Uno. Or when a CA would watch “For the Birds” with her and laugh at the same parts.

This is the beautiful side of healthcare. It’s a team effort.

It’s a reminder that not only medicine makes a patient well.

It’s the smiles, laughter and bragging rights of beating your pulmonologist in chess, again.

Thank you, for being part of our family during our ‘hotel reservation’

———

04/18/2023

She is growing up and I’m so proud.
This morning Desi took the lead on a zoom call with an insurance company (that have become long term friends) — she described her life, daily routine and what it is like for her to battle .

They have been “chauffeurs” Driving Miss Desi to a cure for 5 years now!

Their company goal is to raise $15,000 for the between now and the end of May!

She doesn’t really get the full impact.

But Ross and I do.

And boy are we thankful for every minute those folks listened and every single dollar they will bring in to get her past the finish line of a cure!

———-
✨May 13th is our annual tailgate, and walk, for Desi in Huntsville, AL!

This is our 8th year celebrating how far we have come, and together, how far we will go! 🚙💨

If you’re in North Alabama we would be honored to have you come hang out with us! It’s a very family friendly laid back morning!

*if you’re not in NoAla but want to walk- DM me - I have two ideas!

**Be a Sponsor of Team Driving Miss Desi- I can walk you through *HOW* ☺️

We ask that you // please // register ahead of time- click the link in my bio!

Let’s Go!

03/31/2023

A favorite Easter tradition! This is our 5th Year doing this and it is *so* much fun (for all ages)!

TO ORDER: Go to the link in my bio OR type in the website:
passion.CFF.org/eggmyyardhsv

✨THIS year we have TWO new unique offerings (order one for the adult in your life) that you will see *only* on the website. ✨

VOLUNTEER: join us as a bunny hopper by clicking the link in bio (scroll all the way to the bottom to sign up).

GIFT: Send this to a friend! Just order and email [email protected] to let us know if you need your order send to a different address!

SHARE: Get the word out and invite others to share in this tradition!

QUESTIONS? DM me!



Every single dollar goes to the for more research and our hope for a cure!

10/21/2022

Enrollment closes TONIGHT at midnight ✨Follow my 5 Step Process for a snowball of success leading to a distraction-free and fulfilled life!

Click the link in my bio to reserve your spot in the course!

Classes will be LIVE for 6 Weeks beginning October 26th.

I am glad you are here,
Jamie

06/05/2022

TODAY & TOMORROW ONLY

It is 65 Roses Day and I want to offer one special priced run of our 2022 Team Driving Miss Desi T-Shirts! Love these!

𝐒𝐡𝐢𝐫𝐭𝐬 𝐚𝐫𝐞:
•Comfort Colors brand ( softer with age!)
•A cheerful bright color that is ideal for summer ( or spotting your child at the park 🙃)
•Perfect for spreading awareness about cystic fibrosis and prompting conversations

𝐄𝐚𝐜𝐡 𝐬𝐡𝐢𝐫𝐭 𝐢𝐬 $𝟏𝟗.𝟔𝟓

(Why that amount? See bottom of post 💜)

𝗦𝗶𝘇𝗲𝘀 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲:
Youth XS
Youth Small (Desi is 6 and wears this)
Youth Large
Adult Medium
Adult Large
Adult 2XL

𝐏𝐢𝐜𝐤𝐮𝐩 & 𝐒𝐡𝐢𝐩𝐩𝐢𝐧𝐠:
📍Huntsville, AL- Porch Pickup Available between THIS (Thursday and Saturday)

📍Florence, AL- Porch Pickup Available between THIS (Thursday and Saturday)

📦Need this Shipped? Add $6.50 to your order for shipping. I will visit our friends at the USPS the end of the week to mail all orders.

HOW TO ORDER:
•Venmo your total amount
LIST IN YOUR VENMO:
•What size(s) you would like
•Where you are picking up OR the shipping address you want these sent to.

* To be honest I am very limited on sizes, and quantities. We had offered shirts to those walking at their local Great Strides Walk first.
Should you Venmo and we run out of your size- your money will be fully refunded.

💜 Want to go FULL 65 Roses celebration? Venmo $65/shirt!

Kidding on price but if you do we’ll ship for free and make a donation to the Cystic Fibrosis Foundation!

Here’s to spreading awareness and funding research one t-shirt at a time!

💜Jamie

More behind the 65 Roses Story: https://www.cff.org/about-us/65-roses-story

04/21/2022

📢Calling ALL Chauffeurs! Let’s Drive! 🛻 Do you live in North Alabama? Come to Huntsville on Saturday, May 14 to walk with Team Driving Miss Desi

🛻It is a leisurely walk (not a run 🙃) around Campus 805 followed by tailgating, and visiting, at our DMD tent.

🛻Family and stroller friendly! Come for as little, or as long, as you like. 👨‍👩‍👧‍👦

🛻 If you CAN join us click the link in my bio to sign up!
Not only will this give us an idea of how many folks are coming but it will also give you a way to fundraise on your page or a link to send to friends.

🛻 Don’t live in the Huntsville, North Alabama, area? You can walk in a Great Strides walk close to you! DM me to arrange it.
If you can walk in your town let me know so I can send you a Driving Miss Desi shirt to represent!

🛻Every year we have a new *Driving* theme that is reflected on our shirts. Stay tuned to see this years theme!! 💜🛻✨

Together we have raised over $270,000!
A N D Desi has a life changing medication now because of steps walked and dollars donated!

Your time and money is literally changing the story of this disease…. Keep driving with us, Until It’s Done!

May 14th . . . . . Let’s Drive! 🛻💨

https://fightcf.cff.org/site/TR/GreatStrides/4_Alabama_Birmingham?team_id=103481&pg=team&fr_id=8930

04/20/2022

“ɴᴇᴠᴇʀ ʜᴇʟᴘ ᴀ ᴄʜɪʟᴅ ᴡɪᴛʜ ᴀ ᴛᴀꜱᴋ ᴀᴛ ᴡʜɪᴄʜ ʜᴇ ꜰᴇᴇʟꜱ ʜᴇ ᴄᴀɴ ꜱᴜᴄᴄᴇᴇᴅ.”
- 𝑀𝒶𝓇𝒾𝒶 𝑀𝑜𝓃𝓉𝑒𝓈𝓈𝑜𝓇𝒾

That is the running thread in everything Ross and I teach our children.

This is especially important In regards to cystic fibrosis and empowering all of our children.

Desi knows all of her nine medications by name and what part of the day they are to be taken.

Riggs will often sit right beside her as she is filling her med planner, watching and learning.

Advocacy + Compliance is our end goal.

My hope is that with Desi having ‘control within boundaries’ from an early age she will continue to recognize cystic fibrosis care as a priority.

Now, don’t get me wrong- we are intentional to NOT talk about cystic fibrosis in a negative way or “you have to…. “
Instead we are helping her to ✨respect✨ the materials that go in to CF care.

Just like we respect our home by leaving shoes at the door- we respect our bodies by taking care of them. And for each person that might look different and in some the same ways.

To take a note from Daniel Tiger . “In some ways we are different but in so many ways, we are the same”

At 15 months old she learned to swallow pills whole, today she knows her Chest Physiotherapy settings, length of time. She knows when to change medications for twice daily breathing treatments and swallows more than 25 pills a day…

I am proud of how she continues to take charge!

And for those specifically in the community I highly recommend a med planner (aka pill planner). Any age can help with this ( 1 year olds can hand you a pill and you name it as you fill the box, count out loud as you fill.. etc…)

Not only had is saved time in not having to open numerous bottles several times a day but it is a chance for our children to take on a task on their own…and succeed!

Who else uses a med planner??