Monday, January 18, 2021

GLOW: Galacto Girl Style

As we approach our second GLOW: Galacto Girl Style event (virtual this year) I thought it was probably a good time to look back at last year's event. 

This year will definitely look much different since we won't be GLOWING together in person, but I'm still excited about the awareness and funds we can raise. 

So, a look back: Last year was our first year participating in GLOW -  an amazing fundraiser started by my friend Brittany in Tennessee in honor of her daughter Ansell, who has Galactosemia. Our first event was a huge success starting with two different news crews interviewing me two days before the event. We had 74 people attend the event and between the registrations and donations team GLOW: Galacto Girl Style raised over $2,000. 

Because I'm not what you would call an avid runner (okay, probably could have omitted the word "avid") - we went with a "MOVE" event. There were stations where attendees could move their bodies and their minds. Attendees played basketball, walked laps, did yoga and also colored, played board games and learned about Galactosemia. The day was so much more than I could have expected or hoped for! 

We held the event at our church, South Lansing Christian Church (and hope to gather in person there again for a future event!) The morning of the event I attended church and was so moved by one of the songs, which was so appropriate for that day and our Galactosemia story. Here is part of the Facebook post I made: 

“Great is your faithfulness...you never change, you never fail, O God.” He has been so faithful to me and our family - I may forget that sometimes or question it in moments of weakness, but it’s not that He isn’t faithful - sometimes His timeline just doesn’t match up with ours. And that’s because His plan for us, our life and our family is so much bigger than we could imagine. 

And at the end of the day, after everyone left and we had locked up, I sat in the prayer room at church and thanked God for His faithfulness, for all of you and for my husband and my girls. Navigating this medical condition was not something I could have ever imagined but I would also not change it for anything because that would mean changing my girls and I would never want that. And I asked him for strength and wisdom to keep being the mom my girls need me to be, even when I’m not feeling particularly strong. I know He will continue to be faithful. We are blessed.


GLOW: GALACTO GIRL STYLE 2021 - register today!

So, looking forward to this year - it's not how we would prefer to have the event, but it is what makes sense as we make our way through this pandemic. We can still make memories, get some exercise and learn something new. And most importantly, we can still raise awareness and funds for our Galactosemia community. 


Make sure to register as a virtual participant and then say yes to joining a team and join GLOW: Galacto Girl Style. You will receive a glow in the dark t-shirt and mask for every registration. The money from registration goes to benefit the Galactosemia Foundation. You must register by Feb. 10.

For the details on our specific event - check out our Facebook event: https://fb.me/e/1PD20D6P5

We will start with a Facebook Live event at 10 a.m. - after that, it's up to you, but we ask four things:

1. MOVE - Get active! Do yoga, take a walk or have a dance party - whatever sounds like fun!
2. LEARN - We will share some great new resources available and other information so you can learn more about the disease our Galacto Girls live with, every day.
3. EDUCATE - Help us spread the word about Galactosemia and why it is so important to raise funds and support research by posting information about Galactosemia and Rare Disease Day on your social media.
4. SHARE - Post a picture on social media of you/your family GLOWING on Feb. 28! Use any or all of the following hashtags: #GalactoGirls #glowforgalactosmeia #rarediseaseday


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