Meet Gretchen Schoenstein: 100 Reasons to Celebrate
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
3w ago
Gretchen Schoenstein’s autoimmune disease journey began when she was just 9 years old and was diagnosed with what was previously classified as a soft tissue disease, and now has been determined to be autoimmune in nature. At age 12, Gretchen was diagnosed with Hashimoto’s Thyroiditis. This diagnosis was elusive, with doctors often mistaking her symptoms for mononucleosis. “The symptoms overlapped, and the doctors assumed I was too young to have Hashimoto’s,” Gretchen recalls. A Major Health Crisis Sidelines, and Then Spurs, Her Passion for Running Years after her Hashimoto’s diagnosis, Gretche ..read more
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Meet Lesley Wilks: Pretty Sick
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
1M ago
Lesley Wilks’ journey with autoimmune diseases has not been an easy one. To date, she has been diagnosed with three separate autoimmune diseases – Hidradenitis Suppurativa, Ankylosing Spondylitis, and Crohn’s Disease. With each diagnosis she experienced severe pain, fear, tears, grief, and constantly questioning what her future would look like. Journey to Diagnoses As a teenager in the early 2000’s, Lesley was diagnosed with her first autoimmune disease – Hidradenitis Suppurativa (HS), a condition that begins as pimple-like bumps on the skin in areas such as the underarms and the groin. These ..read more
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CMS Drops Stacking Provision in Medicaid Drug Rebate Proposal
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
2M ago
  The Autoimmune Association, along with 31 other patient organizations, submitted a letter to request the Centers for Medicare & Medicaid Services (CMS) to withdraw the Medicaid Rebate Stacking Policy from Medicaid Drug Rebate Program (MDRP) to protect patients and providers access to medications. We are happy to report that on May 15 CMS responded and indicated that they are not finalizing the proposal regarding stacking at this time. With the proposed policy change, titled “Misclassification of Drugs, Program Administration and Program Integrity Updates under the Medicaid Drug Reb ..read more
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Raising Hope: The Joseph Coniglio Charity Golf Tournament
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
2M ago
  Lucia Coniglio’s family has been significantly impacted by autoimmune disease. She lives with an autoimmune disease causing a narrowing of the esophagus, and her sister lives with Crohn’s disease. In October 2016, her father Joseph was diagnosed with a rare disorder called Protein-Losing Enteropathy (PLE) which dramatically changed his life. He was constantly losing weight, struggling with a compromised immune system, bed-ridden, experienced muscle atrophy and loss of muscle mass, and succumbed to permanent intubation before passing away just a few months later. This loss was devastatin ..read more
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AMP AIM: Modeling relationships to establish breakthroughs in autoimmune health
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
2M ago
  Autoimmune and immune-mediated diseases in the U.S. currently lack a centralized research strategy. Unlike cancer research, which consolidated under the National Cancer Act of 1971, autoimmune research is scattered, primarily organized by specific organs or systems and spread across various institutes within the National Institutes of Health (NIH). The NIH, along with 14 other Institutes and Centers (ICs), is the leading funder of this type of research globally. Each IC operates independently, with its own priorities and funding schemes, often resulting in uncoordinated studies specific ..read more
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The Autoimmune Association Welcomes Two New Board Members
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
3M ago
The Autoimmune Association is pleased to welcome David Ascik and Priya Patil to our Board of Directors. “David and Priya bring a wealth of experience and expertise in strategic business development, finance, and health innovation,” said Molly Murray, president and CEO of the Autoimmune Association. “Their perspectives will be critical as we strive to expand our programs and deepen our impact in the community.” David Ascik David is Vice President of Acquisitions at Foundation Risk Partners, one of the fastest-growing insurance brokerage and consulting firms in the United States. Previously, he ..read more
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The Autoimmune Association Announces the Inaugural Young Adult Advisory Council
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
3M ago
  As part of our commitment to actively engaging with young people living with autoimmune disease and addressing their unique needs, the Autoimmune Association has established the Young Adult Advisory Council (YAAC).  This group of 16 exemplary individuals will work to empower and advocate for young adults aged 15 to 25 living with autoimmune disease. “We understand that young individuals with autoimmune diseases encounter distinct challenges, especially while managing school, balancing their social lives, and beginning their careers. With the valuable insights and perspectives offer ..read more
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Raising Voices on Capitol Hill: Our Inaugural Legislative Fly-In
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
4M ago
  This month marked a groundbreaking moment as we hosted our inaugural Legislative Fly-In, an inspiring day in Washington, D.C. where 20 passionate advocates for autoimmune diseases united. Their mission: To champion critical patient-focused legislation and secure increased federal investment in autoimmune disease research. This group, representing the voices of 50 million Americans living with these conditions, shared their personal journeys and advocated for transformative policy reforms. Catch the highlights in our event recap video! Representing 10 states and a variety of autoimmune d ..read more
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Raising Hope: Tim Lillis
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
4M ago
During the pandemic, Tim Lillis and his friends created a weekly virtual workout, with each friend alternating taking responsibility for leading the workout, and all having fun while getting stronger. Since was not what he considered to be a “fitness-oriented person,” he didn’t know where this new activity would take him. Little did he know, but four years later he’d be doing push-ups on his Facebook page for all to see, as a unique way to raise awareness for autoimmune disease. Tim’s mother is living with Hashimoto’s thyroiditis, an inflammatory autoimmune disease affecting the thyroid gland ..read more
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Get Involved During Autoimmune Awareness Month
American Autoimmune Related Diseases Association Blog
by Colleen Kmiecik
5M ago
  By Molly Murray, President & CEO, Autoimmune Association Celebrated every March, Autoimmune Awareness Month is dedicated to enhancing understanding and recognition of autoimmune diseases. These are conditions where the immune system erroneously attacks the body’s own cells, leading to over 100 different types of autoimmune diseases, including common conditions like psoriasis, celiac disease, multiple sclerosis, Type 1 diabetes, and rheumatoid arthritis, as well as rarer conditions like Behcet’s disease, paroxysmal nocturnal hemoglobinuria (PNH), and mixed connective tissue disease ..read more
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