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Amber-Joi

@iamamberjoi

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SMA advocate. Real room mom.

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The gift of life … HBD to me 🎈 by @iamamberjoi

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4 years ago

by @iamamberjoi

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20 days ago

The most meaningful part of this retreat isn't found in the activities; it's found in the connections that are created along the way. 🤍

Hearing mothers and daughters reflect on their experience reminds us why these spaces matter. The conversations, the growth, the laughter, and the moments of being truly present together become memories that last far beyond the retreat itself. 🌿✨

Tag a friend you think will enjoy or benefit from this retreat. 🤍 by @iamamberjoi

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4 months ago

by @iamamberjoi

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6 months ago

“Never bend your head. Always hold it high. Look the world straight in the eye.”
Helen Keller taken in Miami Beach, Florida by @iamamberjoi

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9 months ago

#Sponsored by Genentech: If you’re looking for updates about Céline’s journey with SMA or insight on what it’s like to be an SMA caregiver, check out @smamyway_us. A place where SMA community members candidly share our highs, lows, tips and stories of living with SMA our way.

Intended for US Audiences. taken in Miami Beach, Florida by @iamamberjoi

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10 months ago

taken in St Barth by @iamamberjoi

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a year ago

#Sponsored by @Genentech: November is National Family Caregivers Month! This is a time when the patience, dedication and grit of being a caregiver is acknowledged. Today I want to send love and positivity to all my fellow caregivers in the SMA community. I see you and I appreciate you! Check out @smamyway_us to hear from myself and other #SMA caregivers. #NFCMonth

Intended for US Audiences. by @iamamberjoi

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a year ago

It was an absolute honor to represent the great state of Florida at the 2025 @curesmaorg Hill Day in Washington DC! Together we spent the day meeting with Congressional leaders and Senate officials to advocate for disability rights and research funding . #CURESMA taken in Capitol Hill, Washington, D.C. by @iamamberjoi

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a year ago

by @iamamberjoi

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a year ago

Miami nights by @iamamberjoi

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3 years ago

I feel compelled to share my mom journey. When Céline was diagnosed with sma , I sought out social media . I wanted so bad to get a glimpse of what her future held . And I needed to connect to someone who understood my circumstance. Now that I know what it means to be a rare disease mom, I want all moms (but especially special needs moms) to know and see that there is happiness for you and your child. AND. Your peace lies both beyond and within the diagnosis should you be so lucky to even get a diagnosis. I hope that if you stumble on my page, you embrace your irreplaceable role as a mother while still taking the time , energy and space to love your self. Full disclosure: I’m not an expert in ANYTHING other than loving Céline. by @iamamberjoi

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4 years ago