💙22q Awareness Day!💙
- gracierenee
- Nov 1, 2020
- 5 min read
November is 22q awareness month starts on the 22nd.
It started back in 2014, by a proud 22q Mom and Raj Hemus, who have created a Facebook Page, called 22qAwarenessDays, which has now grown to over 10,000 followers! Raj reached out to the International 22q11.2 Foundation in 2014 and asked if they could work together to share awareness and well, of course, the foundation did since that they all have the same drive to help raise awareness, and have people learn about 22q11.2 deletion and duplication. Wanna know more about 22q awareness day.
click the link to find out more (https://www.22q.org/)
Now, what is 22q well luckily for you guys I actually have a
Blog page all about 22q link here âž¡(https://gracierenee.wixsite.com/website/what-is-22q). But just to remind you what it is about It's a condition where a small part of chromosome 22 is missing.
when I first look up what is 22q this is what I learned and the symptoms... Only 1 in 1,000 - 4,000 can be affected it the second most common chromosomal disorder right after down syndrome. People with 22q have a 50% chance of passing the deletion on an offspring... Also, 22q occurs without a family history of the syndrome and there is no care for it.
My 22q story begins when I was diagnosed at the age of two. Throughout the years of not having any resources and not knowing anyone who could relate to me and share the same syndrome. My family and I had no clue where to start it was getting tough for me. so I talked to my mom and we diced to see a geneticist at Cleveland client! That's when we discovered a new name for VCF Aka 22q11.2 deletion syndrome. Once I have gone to the geneticist, he told us all about what is 22q deletion syndrome and recommend me to do some research.
That's when I discover so many wonderful amazing young adults like me! That's when I share that I had a disability. It was crazy to see that some people didn't even know I had a disability and never hear of 22q.
That is when I knew God put me here to be a voice for kids like me. To let them know it's okay to be "different". I continue to share awareness and I came across a lot of foundations like the 22q Family Foundation, 22qqties Unite, Familia22q, 22q International Foundation... Along with many other independent advocates. I was thinking of changing my blog to share my life and my story around this same time the 22q family foundation shares a post about telling your story for their website. So I emailed Lindsey Garcia who is an Executive Director she was in charge of the stories. I asked if I could send my story she said yes. So just send my story and a picture of me...
My story was posted on January 6, 2020.
That's when my new journey took off! Never did I thought after sharing my story with the 22q family foundation. That I would be working as a volunteer and being a Young Adult Support Intern along with helping them grow the 22q family Facebook group page for young adults.
I'm so blessed to be part of a foundation that I can relate to.
when I look at the foundation they were all about the word "Family" which is what I stand for on my Instagram. I love that they wanna become a part of your family as well being your organization. They also appreciate the opportunity to serve you all and to help take the mystery out of 22q! Our mission is dedicated to raising awareness for 22q11.2 deletion syndrome while connecting, supporting, and offering accurate information to families affected by the disorder.
Lindsey Garcia, who is an Executive Director told me fun facts about our foundation... The foundation started back in early 2016. We decided to open our doors after the Dempster Family Foundation closed theirs in late 2015. Ryan Dempster was a professional baseball player and pitched for the Chicago Cub
 His daughter Riley was born with 22q and they opened their doors to help support families.Â
After 6 years he decided to close their doors.Â
We were saddened by the loss of such an amazing support to our community and families and we didn’t want to see this burden the community.Â
We applied for our 501c3.Â
Lindsey Garcia's and husband Ryan and I always were involved with the Dempster Family Foundation.Â
We did many fundraising events including working with a local brewery in Chicago.Â
We created our very own brew called: Cohen’s State of Kind. On the label, it mentioned 22q and was not only a fundraising campaign but an awareness campaign too. It was sold locally in Chicago and we had a tasting event as well.Â
Lindsey Garcia's husband also helped create some fun 22q awareness socks.Â
when we did we were fortunate enough to inherit the profits from the Dempster Family Foundation to help us get started.Â
We also were fortunate enough to keep the Education Station program along with Donna Cutler-Landsman who had been working with the Dempster Family Foundation at the time. Now after almost 5 years, we have kept our doors open.Â
We are a team of families working to help families through their 22q journey.
From diagnosis to adulthood, we are with families every step of the way!
Like I said early that is something I didn't have back when I first diagnosed at the age of two to the age I'm now 23... And this is why I love to be part of this amazing organization but there are so many awesome foundations as well but this fits me and exactly what I stand for!
We have a Facebook group page as well for only young adults that have 22q. I post once a week or once a month with fun questions and I share all the fun events & actives that fit our group. Link here (https://www.facebook.com/groups/373071686418645)
We also have a shop now too which is so exciting the shop link here!! (https://outshinelabels.com/collections/the-22q-family-foundation)
This year, please Get involved by
-Commit to posting daily or weekly about 22q and how it has affected you, your family, or child.
-Talk to your co-workers and set up a fundraising event.
-Share your 22q story and what we do at The 22q Family Foundation.
-Sponsor a Day: Ask your employer, friend, or family member if they would sponsor a day to either donate or match donations to The 22q Family Foundation.
just help us spread the word about 22q and/or raise funds,
if you ever have questions
email:
Lindsey@22qfamilyfoundation.org
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