In this series, we will be introducing you to rare disease advocates who made an impact at the state and federal level. These passionate teens are all nominated for RareVoice Awards in the “Federal or State Advocacy by a Teenager” category.
Adam Foye has lived his whole life with a rare muscle disease known as Titin-related centronuclear myopathy. Despite managing numerous health challenges, he faces barriers head-on and advocates for other rare disease patients. As a person with a rare, chronic health condition he knows how important access to good medical care is. When the Affordable Care Act came under threat of repeal, he stood up for all people with ongoing medical challenges.
After losing her father to the x-linked genetic disease adrenoleukodystrophy (ALD) at the age of five, Taylor Kane started raising awareness and money for ALD research by working with Run for ALD. Now, at age 19, Taylor is the lead advocate for the organization, having helped raise more than $200,000 for ALD research. As a carrier of the ALD gene herself, Taylor founded a support group called Y.A.C. (Young ALD Carriers) to unite, educate and empower teenage and young adult female carriers, and to assist them in affecting positive change through advocacy, social media and the legislative process.
For the past ten years, Ian Mignone’s mother has suffered from Addison’s Disease. While volunteering at the University of Florida Health’s emergency room in Jacksonville, he learned that Emergency Medical Service (EMS) personnel could not treat an adrenal crisis simply because they did not have a protocol in place. Since then, he successfully advocated for and been instrumental in passing emergency protocols in eight Florida counties, and is currently working with twenty-one additional counties to continue to press forward throughout Florida.
Emily Muller established herself as a prominent activist in the rare disease community when she launched Emily’s Fight, an awareness campaign, at the age of thirteen. She has spoken at such events as TEDx, the Global Genes RARE Patient Advocacy Summit, SHINE and Starlight Children’s Foundation Midwest Gala, and contributed written pieces to The Mighty and To Write Love On Her Arms. In addition, Emily is a passionate legislative advocate and gained recognition from the House Energy and Commerce Committee after three years of lobbying and internet activism in support of the 21st Century Cures Act.
At 18, Shira Strongin is an accomplished, award-winning activist and writer who has an undiagnosed rare disease that she does not let slow her down. She is the founder of Sick Chicks, an international community that works to empower and unite women with varying disabilities and illnesses. She has also been published in Forbes and has a passion for speaking on topics such as disability rights, women’s rights and engaging the young adult community in advocacy.
Join the celebration to recognize advocates like these on November 15th in Washington, DC! Free registration for the RareVoice Awards is available here.