Sarcoma Advocacy: Rare Disease Week 2015

rareEach year, the last week of February  is set aside as a time dedicated to raising awareness for the incredible needs of the rare disease community.  Last month, several sarcoma advocates made the journey to Washington, DC, to participate in the activities of Rare Disease Week.  Advocates from around the United States came together to participate in several events, including a legislative conference hosted by the Rare Disease Legislative Advocates (RDLA), as well as a day of meetings on Capitol Hill.  During this time, advocates shared their stories with legislators and their staff to demonstrate why more needs to be done for patients with rare diseases like sarcoma.

Cindy Sills

Among the sarcoma advocates in attendance was Don Sills, Sr.  Don, along with his son, Don, Jr., traveled from North Carolina to share the story of his wife Cindy, who was diagnosed with rhabdomyosarcoma in 2012 on their 35th wedding anniversary.  After a valiant battle against the disease, Cindy passed away in 2013.  Don, an advocate since Cindy’s diagnosis, continues to be a tireless voice for those with sarcoma.

The Sarcoma Foundation of America thanks Don and all of the advocates who generously shared their time and effort to be a voice for the sarcoma community.

Here is the story of Don’s Rare Disease Week experience in his own words:


There were many highlights and here are just a few. When we arrived in DC we went out to check where our meetings would be the next day. As I opened the door to the vestibule, I noticed rainbow colors at my feet for a couple of seconds as I walked in from the sun reflecting in. I tried to repeat it, but it was only for that brief moment. We got to meet up with Lori Hodo Hoffman of the Sarcoma Foundation of America. Lori is the first person I’ve met from the SFA and is doing great things for the cause and she passed some valuable information to me. I also got to meet a couple from Nebraska, Nicole and her husband Mick. Mick is currently battling sarcoma and I am happy to say is doing well. I got to meet Jeff, Sharon, and Kimberly who were some of the other rare disease advocates in my group from North Carolina. I coined us the A Team because we used our combined strength of knowledge and our personal stories to make an impact on those we had meetings with. As we told our stories, we were able to raise emotions to tears in some who we talked to.


If you can do that, you know you have their attention. All of the meetings were awesome, but the one with Congressman Walter Jones is my most memorable. He was very, very gracious with his time and was absolutely on board 100% with all we brought to the table.

The trip also brought new common bonds and friendships. Cindy was definitely with us in spirit. I used three photos of her to tell our story of her battle with rhabdomyosarcoma. One was from a year before she was stricken by sarcoma, one of her and our daughters with our grand babies, and one I took of her holding my brother’s bible a couple days before she passed. I was able to tie them all into my impact statements. I usually ended my statement referring to Romans 12:1:2 which was the verse that Cindy miraculously guided us to. It talks about a living sacrifice. I would then ask the officials to sacrifice and support our legislation for the rare disease community. Strength comes in numbers and I left Washington with the satisfaction that our voices were not only heard, but listened to.