MacPac Foundation

@macpacfoundation

MacPac Foundation is a 501(c)(3) organization created to provide support to families, patients, and researchers of HBSL — an ultra rare disease 🧬
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Weeks posts
And don’t even get us started on the plane bathrooms! #iykyk #makeplaneswheelchairaccessible ♿️✈️
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1 month ago
When we avoid the word “disabled”, it infers that it’s a bad word, an ugly word, a shameful word. Here at MacPac, we believe that disabled people are strong, powerful, and have nothing to be ashamed of. Disabled is #NOTABADWORD, spread the word 🗣️
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11 months ago
Happy #rarediseaseday friends! The last day in February is our day to raise awareness, honor, and celebrate #rare patients & their families. 🦓
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1 year ago
and counting! #themoreyouknow🌈 #rarediseaseawareness
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1 year ago
HBSL sisters Marissa and Mahrynn started out as #rare kids, now they’re #rare adults. They’re also performers, musicians, students, and advocates. Their lived experience is why we at MacPac are so passionate about improving accessibility & awareness for #raredisease families 💜
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1 year ago
#raredisease isn’t as rare as you might think! 1 in 10 people are affected by a rare disease during their lifetime. Half of rare diseases don’t have a foundation or research support group, so here at MacPac we strive to be a place of support & advocacy for our #rare siblings 💜
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1 year ago
For #rare families, this time of year can feel isolating. While resilience may sometimes feel like a curse, it is also a superpower. Swipe to the last slide for an important reminder ⭐️
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1 year ago
This #worldmentalhealthday we want to talk about what life is like when you’re #rare 🦓
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1 year ago
The best pain management is whatever pain management works for YOU. But… sometimes when you’re living with chronic pain, having a well meaning person suggest yoga for the ten thousandth time is… less than helpful. INSTEAD, try “how can I best support you?” or sending a random “thinking of you!” text. Sometimes it isn’t about offering a solution, but about listening. Consideration goes further than you’d think! 🦓 💜 #chronicillness #chronicpain #disabilityawareness #spoonie
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1 year ago
September is Leukodystrophy Awareness Month! 🤍
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1 year ago
We at MacPac firmly believe that an imperative step to a more accessible world is raising awareness & supporting education around the obstacles that disabled people face. Our voices are so much stronger together 💜 #themoreyouknow #disabilityrights
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1 year ago
Happy Tuesday, friends, let’s get to expanding our knowledge 🤓 Read til the last slide to see how you can help #raiseawareness and #leavetheworldmoreaccessiblethanyoufoundit
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1 year ago