Rare Disease Week is a multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), that brings together rare disease advocates from across the country to make their voices heard. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their members of Congress.
From our Conquer MG community, three of our ambassadors are attending to advocate for you! Ahead of their journey, we asked them to tell us what motivated them to get involved and participate in Rare Disease Week in Washington, DC. Here are their responses.
Gary Jackson: Forest Park, IL
I am a 61-year-old male living with the rare disease, myasthenia gravis, which currently has no known cure. I am eager to learn about policy proposals that can and will affect the rare disease community. I look forward to meeting with members of Congress to advocate for policy changes for rare diseases and connecting with other advocates from across the country. This is a great opportunity for me to share my story and hear from others with lived experiences of rare diseases. I aim to build awareness around treatment options and the need for increased education of physicians about rare diseases. I want elected officials to support legislation that makes getting approved for disability benefits easier than it is today.
Kelly Aiken: Springfield, IL
This is my first time participating in this national effort to improve the lives of people who live with rare diseases. As I have faced my own struggles with myasthenia gravis (MG), it is my community that helped me through some of the worst days of this disease. MG has led me to lean on support groups, and eventually, I began leading a group and volunteering for the MG community in other ways.
One of our greatest challenges in the rare disease space is building awareness of local support and resources. Living with a rare disease can come with a long list of struggles including working with insurance to get life-saving medications covered, getting disability approval and obtaining the necessary assistive equipment for the home. Nobody should struggle for life-saving care.
I want to help lessen these struggles. By sharing my story, I hope to raise awareness about MG and advocate for bills that support our community. The adage “knowledge is power” takes on a new meaning with MG—knowledge can be lifesaving.
Tammy Carter: Munster, Indiana
I have always been an advocate for my children as well as foster children. It was my job to ensure that all my children received the best education possible. Now, it’s time to advocate for issues that touch my life and to educate others who can pull the levers of change to improve the lives of people living with myasthenia gravis (MG) and rare diseases. I am excited to put my story to work for the greater good of those living with a rare disease.
As someone diagnosed with Seronegative MG, my treatment options are quite limited. I hope that with greater awareness more research will be conducted to expand the available therapies. Struggles with the affordability of treatment is a topic I plan to weave into my story when I meet with my elected officials. I am all too familiar with the stress that comes with the burden of this disease, particularly for those like me who have had multiple hospitalizations and rehabilitation stays. The topic of affordability deserves greater attention.
