This is the second blog post in a series dedicated to why I became an advocate. The first step was identifying Why I’m In This Fight. I think my speech in California pretty much sums up my feelings about why it is so critically important to get involved at any level. Anything can help.
So did I just wake up one morning and decide to get formally involved all on my own? No, not exactly. I was encouraged by someone I now refer to as a mentor.
If you are a great champion of others but struggle on how to get started with lymphedema advocacy, find a mentor! Mentorship relationships can happen in various ways. One of the easiest ways is by natural friendship. In early 2016, I met a wonderful lady by the name of Becky Sharp. Becky was very active in my online group, and one day she messaged me to talk and told me I needed to apply to the LSAP program.
“LSAP? What’s that?” I had no idea what she was talking about.
She went on to explain the purpose of the program and other opportunities for advocacy like lobbying for the Lymphedema Treatment Act. She invited me to apply. I was too wrapped up in caregiving for my father with cancer. We had just found out. I knew at the time I wasn’t going to be able to give it any full commitment, but Becky was understanding and patient.
The following year, she asked me again. If it had not been for Becky’s invite and guidance, I may not have gotten started or realized how much help was needed. I definitely may have never made that first trip to DC.
It’s important for advocates to seek out others to mentor. Volunteer to be a mentor or mentee!!
I have lymphedema. As an educator I decided to learn as much as I could about this chronic condition. Then I decided to become an advocate. You can too even if your lymphedema is so advanced you can only be an advocate from home. What am I doing for advocacy?
I joined the Lymphedema Advocacy Group (LAG) State Team for The Lymphedema Treatment Act and then became even more involved with LAG. I am now on the Legislative Board of LAG and serve as secretary and treasurer of the board. I have made 11 trips to Capitol Hill lobbying for the Lymphedema Treatment Act. I am returning in May for LAG Lobby Days. You can join your state team at www.lymphedematreatmentact.org and help by writing and calling your congressman and or senators to cosponsor our bill. That makes YOU an advocate!
I have also mentored people that I have gotten to know on Facebook sites, through LAG, and in a support group for lymphedema that I started and encourage them to become even more involved in lymphedema advocacy. I am now seeing some of them become mentors to others so this is a great pay it forward form of advocacy.
Become an advocate and see big changes that are happening everyday in bringing awareness, education, and improved treatment for lymphedema. Plus a bonus is becoming good friends with other Lymphies! —Becky Sharp
Of course advocacy never stops. For most of 2018, Becky helped my group by advocating on #LTAFriday. For the first time we leveraged emerging technologies and hosted FB Live sessions to give video updates on the latest calls to action requested by the LAG. Another great advocate that helped was Bill McCann.
Bill has appeared at least twice for his local tv stations to advocate on behalf of the Lymphedema Treatment Act.
I am a Synovial Sarcoma survivor. I had never heard of lymphedema until I was hospitalized many years later with severe sepsis. When I learned my insurance company would not cover my compression garments, it was literally insult to injury. I decided it was time to make a difference. That led me to the Lymphedema Advocacy Group and the Lymphedema Treatment Act. Compression garments are the cornerstone to managing LE. They are medically necessary, not a frivolous fashion statement! I volunteer for the Lymphedema Treatment Act, because I believe every lymphedema patient deserves to live their best possible life. —Bill McCann
While the purpose of this post was to encourage finding a mentor or mentee for lymphedema advocacy, I’d be remiss if I did not mention that my March Madness fundraiser for the LTA is still live. March Madness has turned into April Magic. The following update is available from the LTA.
Drop a word of support for Becky, Bill, and the entire LTA advocacy team trying to get this important bill passed this Congress!
Our March Madness fundraiser has turned into April Magic because a generous donor has stepped forward to offer to match all donations (starting April 3rd) up to $50,000! This has allowed us to dream bigger than we ever thought possible and will enable us to hire a professional lobbying firm to bolster our grassroots advocacy!We’ve upped our goal to to $50,000 and hope you can help us reach it. Donations can be made online through
our CrowdRise site, or by mailing a check to: Lymphedema
Advocacy Group, PO Box 1682, Carrboro, NC 27510.Support for both bills continues to grow thanks to your calls and emails. Keep them coming!
Contact Your Senators / Contact Your Representative