Anna Ramsey has lived with juvenile myositis for most of her adolescent and adult life. Over the years Anna has been actively involved in Cure JM as a fundraiser, an advocate, and most recently the first ever patient on the Board of Directors.
Having been on her journey for sometime, Anna quickly got involved as a volunteer and fundraiser within months of her diagnosis in an effort to take action in her own fight and the fight of others. As Anna puts it,
“I decided to do something about it.”
This early involvement became both rewarding and cathartic. Over time, Anna’s volunteer leadership continues to shine and her willingness to help others has been an inspiration to her peers and the next generation of JM kids alike.
Beyond her role on the Board of Directors, Anna is also a founding member of the CureJM Advocates Council, a group of young adults living with JM that are shaping ideas for improved care.
Recently, we interviewed Anna to get her thoughts on her involvement and inspiring leadership. Thank you Anna for all that you have done and continue to do for our mission, we celebrate you today!
Interview with Anna Ramsey:
- You’ve been involved with Cure JM for many years and, most recently, have taken on leadership roles with the BoD and the Cure JM Advocates Council. How did you first become involved in Cure JM?
I found Cure JM a few months after being diagnosed as a result of desperate Google research for any information I could get my hands on. At the time, they were doing Giving Tuesday, and I set up a fundraising page. I raised a significant amount of money and realized it was cathartic for me to take action against my diagnosis. We went to the next national conference, and I started to make friends and community. Seeing the impact of Cure JM on my family only made me want to get more involved.
- What led you to volunteer your time and talents to Cure JM’s mission?
It is beyond worth it to me to spend my time and energy on something that not only benefits me but also other families to whom I can personally relate. I have seen how my time and energy has made a difference and it gives me confidence to keep working towards higher goals and making larger impacts on the community.
- What is the Cure JM Advocates Council and what do you hope that it accomplishes?
My only concern after my first conference was I did not feel like there were any breakout sessions directed specifically towards the young adults and teens with JDM. I started working with the friends I made to speak up and advocate for sessions that would be impactful for us as we were the whole reason for the conferences in the first place. The Cure JM Advocates Council is the culmination of my original wishes for the organization. It is a group of young adults ages 17+ who come together to share their experiences with the hopes of making further impacts on the organization to directly impact the lives of families with JDM. We know better than anyone what it is like to have this disease, so we have a very unique perspective on what changes we need to see and what is most important to us.
- Why is mentoring younger generation JM kids meaningful to you?
I truly believe that I would have had a much worse time battling my JDM if I had not met the other teens I did with JDM who had already experienced the disease for a few years. Those friendships have gotten me through some of my hardest moments, and having someone else who knows what you are going through is almost impossible to find when you have such a rare disease. Having a mentorship program provides kids with someone who has been where they are and can make them feel less alone.
- What lasting impact do you hope to leave behind for this next generation of JM kids?
I hope to show these kids that their voices matter and they have the power they need to advocate for themselves. I want to leave the board with more than just one patient on it and for that number to continue to grow.
- What are some of the best ways to get involved in Cure JM for anyone who is inspired to help advance our mission?
It is important to only do what feels comfortable for you. If you want to go big and host an event that can be super fun, if you are not ready to tell the world about your disease, come to other people’s events and meet other families first. We have strength in numbers and providing support to another family is just as important as raising money.
- What impact can be made for the JM Community with more participation from our families and supporters?
By raising money we can continue to fund new medications with fewer side effects and make treatment better. More participation also means educating more doctors and shortening diagnosis times.
- What makes volunteering and serving JM families fun?
I love getting to know other families and seeing the impact our research has already had on kiddos treatment and outcomes. I love the family I have created at Cure JM and it is an honor to be able to work with people who are just as committed as I am.
