As a chronic disease patient, sometimes it can feel like you don’t have a voice in the American health care system. Chronic Disease Coalition Ambassadors are actively involved in creating local, state and national change to improve healthcare policy for all chronic disease patients.
While you don’t have to be an ambassador to participate with the Coalition, ambassadors:
- Attend monthly policy calls for the latest updates
- Engage directly with Coalition leadership
- Have their story featured in newsletters and social media to promote advocacy and disease awareness
- Give input on policy priorities, participate in surveys and join the ambassadors private Facebook group and Discord channel as part of the supportive community
- Be considered for training, media interviews and future leadership roles
If you are a patient looking for disease-specific support, check out our Partners & Allies.
Ambassador Spotlight
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Adam Lindo FloridaVestibular migraines have completely changed my life as it has changed my ability to participate in common daily tasks, extra curricular activities, and has impacted my career. I advocate because the long wait times between appointments, lack of proper education, and lack of efficient care plans…
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Anna Ball DelawareIn the middle of the pandemic two years ago, I suddenly became very sick and began my chronic illness journey. A number of lab tests revealed antibodies for Lupus and Sjörgens Syndrome, two systemic autoimmune diseases that my doctors and I are still trying to figure out. I haven't had an easy time…
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Anna Williams IndianaWhile I have had migraine since childhood, in my teens and early 20s I had significant symptoms that depleted my quality of life. Doctors settled on fibromyalgia as a diagnosis. I had to learn to manage on my own as doctors didn’t know how to help and I often felt they didn’t believe me. Fast…
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Apollonia Bynum TexasWhile in my teenage years I used to suffer but I kept it to myself! But after having my second child I was in so much pain. They began doing tests and procedures, and I was diagnosed with Interstitial Cystitis. By the age of 28 I was diagnosed with so many other chronic diseases, but I looked fine…
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Ashley Goodrich AlaskaI was diagnosed with hypothyroidism in 2012. I had gained a ton of weight. I was fatigued all the time. It felt as if someone had hooked a vacuum up to me and sucked all of the energy out of my body. There were days that I couldn't get out of bed. I had sleep issues which led to chronic headaches.…
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Ashley Petersen CaliforniaWhen I started my first full time job, I never anticipated what would come next. It started with nearly passing out during a meeting and progressed to over eight years of life altering diagnoses, and eventually permanently disabled. Being so sick caused me to feel like I lost my purpose and the…
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Ashlyn Gierling TexasMy journey began during my freshman year of college in 2022. Starting off the school year with roommate issues and mold-infested dorms, only progressed into ER visits and misdiagnosed anxiety to finally a dysautonomia diagnosis in 2023. I, then, transferred to a university closer to home to…
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Beth Ruff PennsylvaniaMy son was diagnosed with hereditary pancreatitis in 2022. His grandfather and uncles also have the condition. It is a progressive disease that leads to chronic pain and the destruction of the pancreas. As a caretaker for my son, I have a new appreciation for the chronic health problem. A new…
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Brandie Harper MarylandGastroparesis has had big effect on my life. One day I was perfectly fine – active, able to eat the foods that I love – and the next, I am no longer able enjoy the foods I once did. Now, everything I do I have to plan for, or take day by day. Gastroparesis has not only affected me physically, but…
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Bridget Edwards MaineI was diagnosed with Afibrinogenemia when I was just one day old. Afibrinogenemia is a rare form of a Bleeding Disorder in which I am missing Factor 1 (Fibrinogen), which aids in the blood clotting process. I will have this condition for the rest of my life, and I currently receive a prophylactic…
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Brittany Dickerson South CarolinaPolycystic Kidney Disease (PKD) and hypertension have surprisingly enriched my life in so many ways. It's not everyday that you hear the word enriched when describing the effects of a chronic condition, but for me, it applies perfectly. I was diagnosed with PKD from my father's side of the family…
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Brittany Leech OregonAs a patient with both POTS-Dysautonomia and Cystinuria, a condition characterized by the buildup of the amino acid cystine in the kidneys and bladder, I have learned how to adapt both my career and social life to maintain my quality of life.While adapting to life with chronic illness sometimes…
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Patient Stories
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Mental Health Care Is Chronic Disease Care – So Why Won’t Insurers Treat it That Way?If you manage a chronic disease, you know the work involved: tracking symptoms, navigating insurance, making it to appointments, managing medications. What doesn’t always get talked about is the…
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Medicaid Work Requirements: Protecting Patients While Keeping Communities StrongWhen people talk about Medicaid work requirements, they often talk about who isn’t working. But for people managing chronic disease, the more important question is: what makes work possible in the…
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Take Action Now: California SpotlightRight now, California lawmakers are debating bills that will directly affect how patients access medications, navigate insurance coverage, and manage out-of-pocket costs. Some proposals would improve…
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My Chronic Companion: Meet the Pets Who Bring Joy to Our Ambassador CommunityIn celebration of National Pet Day on April 11, the Coalition is recognizing the furry friends who bring joy to the lives of our ambassadors. Owning a pet not only brings companionship, but can…
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