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Rare Across America Event Summary

The week of March 1, 2021, 10 MG advocates volunteered their time to participate in RARE Across America hosted by the EveryLife Foundation for Rare Diseases. The volunteers had meetings with Senators and Representatives to discuss key advocacy issues. Meetings were held virtually, and advocates were paired with other advocates from their state or local district.  If you are interested in participating in MG advocacy efforts, please contact Genna Mvalo at gmvalo@myasthenia.org.

 

Key Legislative asks included:

  • Join the Rare Disease Caucus to learn more about the challenges that the rare disease community faces and the policy priorities of the community.
  • Cosponsor the Speeding Therapy Access Today (STAT) to strengthen rare disease patient access to FDA-approved therapies.
  • Support Rare Disease Programs Appropriations to improve the accuracy of diagnosis of rare disease, increase funding for rare disease infrastructure and expand support.
  • Cosponsor the Newborn Screening Saves Lives Reauthorization Act, HR 482

MGFA is proud to support this advocacy effort and to make an impact on federal policy for the needs of the MG Community. 

 

MGFA Participant Testimonials

 

Kim Eldridge, MGFA Board Member, Advocacy Workgroup Lead, Kentucky
While the virtual experience pales a little in comparison to being in person (there is just something so exciting about being in THE capitol buildings!), it was still an amazing experience. Many staffers that we met with last year remembered us. Congressman Guthrie (KY) attended our meeting with his office. He was so engaging! He was asking questions, and shared his own experiences that his son went through as a child that were similar to those experienced by a member of our group. He spoke about a meeting with President Biden and VP Harris just the day before our meeting. They are discussing a bipartisan special agency, possibly in NIH, that will work on rare diseases. He acknowledged that the Marketplace does not work well for people like us. It was truly an uplifting conversation.

 

Congressman Yarmuth also attended our meeting with his office. We had a similar experience with him. They were compassionate, they listened intently, and joined in on discussions about the "asks" from each of us.

 

One underlying theme across all meetings was "thank you." Not from us, but from those we were meeting with. Each office thanked us for taking the time to come and talk to them, to share our concerns and issues, and for fighting for what we need and believe will help others.

 

And a serious shout out to Laura Chandler. This was our second event together on Capitol Hill, and she truly does an amazing job of crafting an awesome pitch. She was the "closer" for our meetings, and she is very good at it! I was happy to have her on our team again this year.

 

Thank you to everyone that participated! You amplified the voices of the MG community at the highest level.

 

Laura Chandler, Volunteer, Kentucky
I echo a lot of what Kim said about the experience. Adjusting to online meetings created a learning curve, although it was certainly easier than hoofing it around Capitol Hill! However, walking the halls of our government, sitting in the offices of our senators and representatives, and knowing that you are working to make a difference at the highest level is so rewarding.

 

Many of us have to advocate for ourselves in everyday life. We have to find ways to make MG make sense to our friends, families, coworkers, and doctors. It can make us feel very vulnerable; we have to share the shortcomings of our bodies, our lives, and sometimes our worst fears in order to be heard. But, using my story to effect change is one of the most empowering experiences I’ve had.

 

Advocacy also is a great reminder that you aren't alone. I’ve been lucky to meet and learn from another MG-er in Kentucky, Kim Eldridge, who puts a lot of time into leading MG support groups, MGFA, and serving as a leader in online MG groups. Having a friend and a strong advocate like her to emulate has been a game-changer!

 

I also find strength in advocating for MG alongside people with different rare diseases. Our symptoms may be different, but our experiences are similar. Putting our collective needs together makes our voice stronger and louder.

 

I encourage every MG-er to practice telling their story and being honest about their needs. For advocacy on Capitol Hill, that comes in the form of a 2-3 minute “pitch” or “elevator speech” in which you explain the disease, give your story and how it has affected your life, and make an “ask” or request for what can be done to help in terms of policy. In everyday life, advocacy can be simply explaining MG, telling someone why you use a cane or wear an eyepatch, saying no to taking on a commitment, or requesting information from your doctor about a new treatment. Your “ask” could be for a relative to check out the MGFA website to learn more about your disease, or for a boss to help find solutions for mitigating activities that cause you fatigue. Increasing awareness of MG, telling your story, ad articulating your needs is advocacy in a nutshell.

 

 

Deborah Vick, Volunteer
I was able to advocate at all 6 meetings I attended. I used my personal stories, especially as seronnegative MG patient, to introduce the ask for the STAT Act. My talking points began with my connection to the rare disease community, my advocacy endeavors followed by the limitations and at times, life threatening experiences. Afterwhich, I discussed the types of treatments available to me and the absolute need for the research, cohesive connections between researchers, clinical trials, FDA approval and then bringing said treatments to the marketplace, with additional focus on the medicare and medical coverage.

 

As Kim stated, virtually does not have the same feel of the "rustle and bustle" one feels when on the "Hill". There is a certain feel of camaraderie, connections and networking that is not emulated in this virtual world. Just as being present, despite the lack of accessibility in DC, has an immense feeling. Especially being present, in the epicenter of American Politics surrounded by historical buildings and places. That being said, the virtual experience still took its toll on me, but much less so than that of being in DC trying to attend all the amazing programs.

Kristina Voskes, Volunteer
Rare Across America was a great opportunity to learn about upcoming legislation that can directly impact those living with a rare disease, and a chance to share my personal MG story with my state representatives. Myasthenia Gravis can be a particularly challenging condition to live with. Every experience is different, FDA approved treatment options are limited, and funding for research pales in comparison to other diseases. Facing MG can feel like an uphill battle at times, but Rare Across America felt like a huge step in the right direction. Getting the opportunity to advocate for a Rare Disease Center of Excellence was both empowering and hopefully impactful. Meeting with Congresswoman Bonamici (OR) was particularly meaningful. She was compassionate and genuinely interested in my life with MG, and recognized that the frequency at which a disease occurs should not determine the level of care or quality of options that patients have access to.

 

Natalia Travis, Volunteer
This was my first year attending, so I don’t really have a basis for comparison. However, I think it is important to mention how difficult it is to travel when one is chronically ill, and that difficulty likely would have dissuaded me from attending this year. Having a virtual option may have provided the opportunity to get involved that some may not have otherwise had. That being said, it was really encouraging to see both local rare disease advocates doing their best to represent their loved ones with rare diseases, and to see that the offices of our elected officials truly do take an interest in our experiences and are willing to listen to our stories. I’m hoping to attend next year, if given the opportunity.

A World Without MG