Kate Colbert is fundraising
Become a Founding "Guardian" at EDS Guardians, Inc
If you know much about Ehlers-Danlos Syndromes -- a group of heritable connective tissue disorders known simply as EDS -- you know that the children and adults coping with EDS often lack sufficient support or access to care. BUT THEY ARE WORTHY OF THE CARE THEY SEEK.
A lifelong chronic illness, EDS can challenge even the most supportive families to fully care for their patient -- to provide world-class medical care and the comforts and adaptations needed for bodies with impaired collagen, hypermobile joints, and fragile skin, organs, tendons, ligaments, and vascular systems. As they say, "It's not easy being a zebra" (or being the parent, partner, or caregiver for one).
At EDS Guardians, Inc., the world's 1st patient-to-patient, caregiver-to-caregiver "pay-it-forward" charity dedicated to helping EDS patients who lack support and need vital medical care, we're just getting started on a truly bold mission.
We want to eradicate the heartbreaking stories about patients who have life-limiting complications (like tethered cord syndrome, upper cervical instability, pelvic organ prolapse, etc.) who are bed-bound and/or in constant pain because they don't have the money, the support, or the know-how to access the care they need and deserve.
There are patients desperately waiting for more paychecks or personal donations (or a miracle) to afford their surgical co-pays, their travel expenses to reach the doctors who can help them, or the medical equipment, supplies, and medication that will make their lives less painful and more functional. There are caregivers and patients who don't know how to prepare for a mission-critical medical appointment, how to plan for a long hospital stay, or how to fight for the care they deserve. That's where EDS Guardians, Inc., comes in.
Founded by EDS patients and led by a Board of Directors exclusively comprising EDS patients, caregivers, and medical experts, EDS Guardians was born from a simple (but big) idea:
"What if every EDS patient -- once they are better after a surgery or feeling stronger after medical care gets them to a good, manageable place -- helped another EDS patient?"
Nobody knows how to "live your best life as an EDS patient" better than another EDS patient. Nobody knows how to care-give for an EDS patient better than a current EDS caregiver. What would the world look like if patients helped patients (with the support of a well-run 501(c)(3) nonprofit organization standing behind them) and if the world's dazzle of EDS patients suddenly felt less alone, better informed, truly supported and believed, and comforted and cared for at every turn? Let's find out together.
Your donations to this first-ever EDS Guardians "Giving Tuesday" campaign will support inaugural programs like travel grants for surgical patients and a volunteer/patient program.
With a firm commitment to help flexible patients, donors to EDS Guardians (by the way, we call YOU "guardians" too!) will change the landscape for newly diagnosed and struggling Ehlers-Danlos Syndromes patients. We dream of a moment where the very patients supported through our programs will (as a result) be functioning so well that they're volunteering to help the NEXT group of patients to benefit from our love and care. Together, let's pay it forward.
PLEASE GIVE. Include EDS Guardians, Inc., in your year-end giving and become a shining light of hope to the EDS community. We look forward to making you proud through the important work we're about to do.
EDS Guardians, Inc., is a federally recognized 501(c)(3) tax-exempt charity. Your gift may qualify as a charitable deduction for federal income tax purposes.
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