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🔆 Support the disability community
🔆 Designs inspired by individuals + orgs
🔆 Majority of profits go back to them 💰
🔆 Disability owned + employed
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Check out this cool temporary tattoo of our logo—created with the help of our friends at @outshinelabels—and worn by one of our amazing patients! 💙✨ Want one for yourself? Stop by the ACE-WS table at the Philly Walk for Williams Syndrome this Sunday and grab yours!

Event details below!

🗓 Sunday, Sept. 14
⏰ 9 AM – 12 PM
📍 Wilson Farm Park, Tot Lot Pavilion – Chesterbrook, PA

🎟 Text WSAPHILLY to 71777 for tickets
🔗 Link in bio for registration and details!

See you there! 💙 #WilliamsSyndrome #PhillyWalkWS #ACEStrong #CommunitySupport #OutshineLabels #aceforws #childrenshospitalofphiladelphia #pennmedicine #williamssyndromeassociation by @outshinelabels
17
a year ago
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Happy Birthday, to our sweet Ava Babe-ah today! 💝🎉Can you believe that she’s N-I-N-E years old?!?! It just doesn’t seem possible!

She still loves all things Halloween, her Wolfie’s, her family and friends, candy, sugar, ice cream, her iPad, her kitty named Simone…and has a new love for twirly dresses and vanilla Oreo’s! 

You light up our lives, Ava! Happy 9th Birthday to you!!! 💝🎂🍭 taken in Gilbert, Arizona by @outshinelabels
44
2 years ago
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One of the most beautiful things about our world is that not any two people are exactly the same.  We ALL are different in our own unique ways, which also includes our abilities. Inclusivity for all is essential to move forward! #inclusionmatters #diffability #disability #disabilityawareness by @outshinelabels
7
2 years ago
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Last chance! Preorders close TONIGHT at 11:59pm PST for our Rare But Real @williamssyndrome Awareness Shirts that the Arizona Diamondbacks are STILL wearing! 🔥⚾️ Be part of the excitement and spread awareness for a rare disease that’s basking in this incredible moment! 💙💚❤️ Link in Profile to purchase…orders ship in mid-August!

Thank you @dbacks, Torey Lovullo, Geno Suárez @eugenio_suarez7, and the ENTIRE D’Backs team for your incredible support! We’re so thankful that the Diamondback’s organization not only supports the disability community, but the most marginalized subgroup within it — the Rare Disease community, where Williams syndrome fits in. 💙💚❤️ PS. Congrats to Slade Caldwell, 1st Round, 29th Pick for joining the team! (4th picture in reel) @slade.mc3 

#Diamondbacks #arizonadiamondbacks #dbacksgiveback @dbacksgiveback #williamssyndrome  #wsawareness #rarebutreal #rarediseaseadvocate #raredisease #spreadawareness #disabilityadvocate #disabilityawarenessmonth #disabilityawareness #disabilityowned taken in Chase Field by @outshinelabels
0
2 years ago
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It’s a BIG deal when Williams syndrome gets awareness like this! When you’re classified as a rare disease, or an “orphan disease” as it’s sometimes called, it’s hard to get attention amongst a sea of disabilities that are more commonly known and affect a higher population.

I’d like to give a huge thank you to Amiel Sawdaye, Assistant General Manager of the Arizona Diamondbacks (@dbacks) for making this interview happen on National TV. You did a great job! 👏🏼💯

I’d also like to give a big shoutout to Jody Jackson, (@jodysports) who genuinely took time in advance to learn a lot about WS and asked great questions to help viewers learn too. Thank you, Jody!

And finally, Eugenio Suárez (@eugenio_suarez7), for hitting a solo home run during the interview, (for Mia Sawdaye, I’m sure of it), which helped the D’Backs get a W against the Atlanta Braves on 7/11, while a huge group of our WS community was in attendance! Perfect timing, Bolibomba! 🔥

To purchase Rare But Real shirts, follow the link in my bio today! Preorders are open for this Limited Edition shirt that the D’Backs wear until 7/31! Don’t miss out! Multiple styles to pick from too! ⚾️❤️💚💙

#williamssyndrome #wsawareness #raredisease #orphandisease #rarebutreal #dbacks #eugeniosuárez #arizonadiamondbacks #spreadawareness #raiseawareness #dbacksgiveback @williamssyndrome taken in Chase Field by @outshinelabels
5
2 years ago
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“July 26th is National Disability Independence Day, which serves as a reminder of the ongoing struggle for accessibility, inclusion, and empowerment for individuals with disabilities.

As the Director of Joy @innersenseorganicbeauty, Morgan brings the internal team together during meetings, connects with salon partners and Pro Stylists, establishes exciting dialogue with customers and posts uplifting content to social — ensuring our brand values of individuality and authenticity are reflected in all that we do. Today, she shares with us best practices for washing our hair. Don’t forget to awaken your Innersense products!” — @innersenseorganicbeauty 

Morgan was recently the Ambassador for the 2024 National Williams Syndrome convention in Phoenix, AZ too! Make sure you watch the last clip of her throwing the 1st Pitch at the Diamondback’s game, on 7-11-24. 

#NationalDisabilityIndependenceDay #DisabilityMonth #inclusión #inclusion #DisabilityintheWorkplace #inclusaosocial #WilliamsSyndrome #WSAwareness #RareButReal #RareDisease by @outshinelabels
9
2 years ago
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Two weeks ago, I had the pleasure to provide Rare But Real shirts to the Arizona Diamondbacks (@dbacks) who wore them pre-game on 7/11 when they beat the Atlanta Braves 1-0.💥 

I worked with Amiel & Danielle Sawdaye to create a simple and bold design that we hoped the team would wear; to raise awareness for Williams syndrome…the rare condition that both of our daughters have. Players don’t “have” to wear shirts like these, but word got around that they supported the Sawdaye’s daughter, Mia, and the WHOLE team (and coaches) wore them with pride! (And continue to wear them, which is extra special!)🥰

Today, I’m making these shirts available for PREORDER through the end of the month, 7/31 at 11:59pm PST! Click the link in my profile to grab yours today! They are $25 each or $22 each if you purchase 3 or more. And the best part? 70% of profits support the Williams Syndrome Association (@williamssyndrome) — the country’s largest 501c3 nonprofit supporting those living with Williams syndrome. ❤️💚💙

#williamssyndrome #williamssyndromeawareness #wsawareness #arizonadiamondbacks #dbacks #dbacksgiveback #rarebutreal #rarediseaseadvocate #raredisease #disabilityawareness #rarediseaseawareness taken in Chase Field by @outshinelabels
14
2 years ago
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During last night’s game the @dbacks raised awareness about Williams Syndrome in support of Mia Sawdaye, daughter of Assistant General Manager Amiel Sawdaye. Mia was born with the rare condition characterized by medical problems involving cardiovascular disease, developmental delays and learning challenges. 

D-backs players are sporting special shirts prior to the game and the D-backs will host over 1,400 guests impacted by the disease. Follow @williamssyndrome to learn more.” — @dbacksgiveback 

I’d like to thank Amiel and Danielle Sawdaye for including myself and @outshinelabels on this amazing project! 🤗❤️

#dbacksbackwilliamssyndrome #williamssyndrome #williamssyndromeawareness #diamondbacks #arizonadiamondbacks taken in Chase Field by @outshinelabels
7
2 years ago
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Can you help us? 🥰 Our family has 24 HOURS to raise as much money as we can for the Williams Syndrome Association (@williamssyndrome). We set our goal for $1,000 — but I think we can do even better! Why are we doing this?

Our beautiful daughter, Ava, has Williams syndrome and the WSA nonprofit is our greatest support system…funded ENTIRELY by private donations received from friends, relatives, and our loving social media followers.

Why are we only funded by “Private Donors”— you may ask? Great question! We should seek donations from every company that exists, right?! We wish.

Unfortunately, it’s not that easy. And there’s a very sad reason why — there’s nothing in it for them. 🥺 Here’s the slightly longer reason why…

🦠 Williams syndrome is classified as a “rare disease”.

🦠 Rare diseases don’t affect a large population of people.

🦠 So basically…people with Williams syndrome…don’t matter??? 💔 There’s not “enough of them” to make it worthwhile? Roughly ~35,000 people with WS in the USA…on their own?

Pharmaceutical companies and for-profit companies don’t receive financial incentives to support us. And as for our government? They don’t support us either. 🥺

Sorry to bring you down on a Friday night, but imagine feeling this pressure on a daily basis, like our nonprofit does. They have to fund their own research studies for crying out loud, which as you can imagine, are NOT cheap.

So let’s get to feeling better, yeah?! 😉 Click the link in our bio to make a donation to the WSA, and feel good knowing that YOU helped a nonprofit that truly needs people like you for support. If the link in my bio’s to complicated to follow, do this instead! Text WEEKEND36 to 71777

That’s it! It’s that easy! And listen. If Ava and I can find 24 people to donate $24, we’d be over halfway to our goal! We can do it, right?! Show us! ❤️

PS. If you donate…please comment below because we want to make sure we thank you!!! 😘 Love you all, and thanks so much for loving and caring about us! Feel free to SHARE this post, too!!!

#weekendforwilliams #williamssyndromeawareness #williamssyndrome #raredisease #rarediseaseawareness taken in Gilbert, Arizona by @outshinelabels
8
2 years ago
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“It embarrassingly and shamefully took until having my own child with a disability to see the vast discrimination and segregation of disabled people. Much like other forms of prejudice and hate, one doesn’t see it until they have to. 

For this year’s Williams Syndrome Awareness month, I want to pay tribute and gratitude to the disabled people and disability advocates that have come before Libi. Thank you, I am forever in debt to you….my greatest wish, outside of raising good children, is to march forth in the path you have set. 

Cheers to all the fun—and funNy—times life with disability brings. Because of the hard work put forth before us, they far exceed the hardships! 
🥂💙❤️💚🥂

Happy Williams Syndrome Awareness Month 2024!”
— @marchforth37 

Give Libi and her Mama, Amy a follow today @marchforth37 ❤️

#williamssyndrome #williamssyndromeawareness #williamssyndromeassociation #loveforlibi #judyheumann #disability #disabilityrights #disabilitypride #marchforth #wsawareness #disabilityawareness #disabilityparenting #disabilityrights #disability #disabled #endhate by @outshinelabels
8
2 years ago
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It’s May 1st, aka Williams Syndrome Awareness Month! To kick things off, I’d like to ask my friends to consider volunteering for our upcoming national convention in Phoenix, Arizona! 

As you know, my youngest daughter, Ava (pictured 😍) has a rare condition called Williams Syndrome and this summer the largest nonprofit that supports those with Williams Syndrome will be here in the valley holding their bi-annual national convention and we NEED VOLUNTEERS! 

All of the details for what we need, who is eligible, and how to apply can be found on the attached flyer. We need 150 people, per day to help out with our kiddos (and their typical siblings), so that parents and caregivers can attend important sessions about Williams syndrome.

DATES: July 9 — July 13, 2024
WHERE: Hyatt Regency Phoenix

Please share this post, tag your friends, family members, and local businesses. Thank you!

Follow this Link to Register & read more!

https://www.williams-syndrome.org/convention-volunteers

— with Kristin Boxall. by @outshinelabels
10
2 years ago
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We had a great day yesterday attending a football camp held by Luis Zendejas and his nonprofit: @zkick4life. Though Ava may not have executed all of the drills properly, she had a super fun time anyway! The best part was seeing her look of relief when she realized she wasn’t going to be tackled by any of the football players! 😂 Because yeah…when she heard her class was going to play football, she thought they were literally going to play football. 😂 Now I understand why she said was “so nervous” about going! Thank you Mr. Zendejas and the team @zkick4life 🏈 

#NonprofitsofInstagram #LuisZendejas #FootballCamp #DisabilityInclusion #NoKidLeftBehind #luiszendejasfoundation #CommunityService #nflkicker taken in Gilbert, Arizona by @outshinelabels
4
3 years ago
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