Advocating for changes in public policy contributes to the relentless force in finding a cure and improving the lives of people affected by scleroderma. Each individual in the scleroderma community can make an incredible difference by reaching out to their elected officials to encourage them to support legislation for people affected by scleroderma. Our chapter will shout out our local advocates and highlight the incredible work for scleroderma advocacy. Look here for our advocacy updates and advocate highlights!
You can make a difference for the future of thousands of scleroderma patients by helping us advocate for scleroderma research. We’ve made it easy for you to get involved and contact your Representatives, the local media, television stations, newspapers and more. Learn how to get started.
Scleroderma Awareness Month takes place in June each year and is highlighted by World Scleroderma Day, June 29. Check this page to learn about ways that you can engage in the effort to increase awareness and understanding of scleroderma and the ways in which the Foundation helps individuals and families affected by the disease.
Advocacy touches the life of juveniles also
Advocacy, to me, means taking control of my scleroderma and doing something to make a difference for other patients. As a person living with scleroderma (diagnosed at a young age), speaking to medical students was my first encounter with advocacy.
Standing before the medical students and telling them about my personal journey with this disease was easy. All I had to do was talk about my experiences. The students at all the medical schools need to learn about scleroderma; when students graduate, they can more quickly diagnose and treat scleroderma patients making their lives better.
Part of my advocacy also includes speaking at my school, writing papers about scleroderma, and bringing awareness to my community through events. My mom is active in all areas of advocacy and has participated in Capitol Hill Day sharing our scleroderma journey with Congressional leaders.
My grandmother has traveled to Washington, DC and shared what having a granddaughter with scleroderma is like for her.
Scleroderma touches all of our lives but by being advocates we are making an impact and making positive changes. You can do the same thing. Get involved, create awareness and educate those in the community.
-Grace Ella Pour
How My Journey Began
Most people diagnosed with scleroderma hear three words: You have Scleroderma! But in my case, it was 9 words: You will not live a long and full life!
That was how my journey began but not how it will end because I made the choice to become an advocate for NSFM and to use my skills to help educate and create awareness and to make changes.
As an advocate I have accomplished so much. Yearly, I speak to four medical schools in Michigan and educate their students about what life with scleroderma is like. It is easy to share my personal journey with them. It helps medical students to learn about scleroderma firsthand from those of us living with the disease.
As an advocate I have participated in virtual and in-person meetings with our Congressional leaders helping them to better understand the current advocacy needs of NSF. This is also not a complicate task because once again I am sharing my journey with them and just telling them what living with scleroderma is like
Yearly I work with NSFM to obtain proclamations from the city and state and help with getting buildings lit so awareness throughout the state can shine during June as it is National Scleroderma Awareness Month.
Being an advocate is something I am proud of; it is important work that takes those nine words I heard years ago and changes them. It gives me control of what I do every day with my life with scleroderma.
I encourage you to get involved, become an advocate and be part of the change.
One phone call made the difference
One phone call changed my life, literally it was one phone call that turned me into an advocate.
I received a call from National Scleroderma Foundation Michigan asking me to participate in a meeting with my Congressional leader. I had never done anything like this before but the kind woman on the other end of the phone assured me she would be there and that all I needed to do was share my personal journey with scleroderma. I was so scared and out of my comfort zone, but I wanted to help so I agreed.
That was the first of many successful Congressional meetings, both in-person and virtually. I participate yearly now, and it is in fact easy. That meeting was lifechanging! I learned that I could be an advocate, I learned my story mattered and that it was important for me to share it. Congressional leaders listened and what I said helped make changes for the scleroderma community.
I am an advocate; I do many things. I help at health fairs; I speak yearly virtually and in front of four medical schools to help educate these young minds about scleroderma. These talks make a difference. I have met these medical students in medical surroundings years later and they remember me, and they remark how meaningful the talks are and that they learned so much from them.
Being an advocate means making an impact and helping to educate others and creating awareness. I encourage you to join the rest of us and become an advocate. It is not hard and NSFM makes it fun and a positive experience. Make new friends, experience something new in your life all while watching change happen for the scleroderma community.