All the Little Voices Working Together - Welcome to the MS Public Policy Conference

Lisa Emrich

Writer, HealthCentral.com and Brass and Ivory: Life with MS and RA.

 

At 44, Lee Domenico, mother of two from New Jersey, began running after taking up walking every day during lunch. Her first run was 2.5 miles non-stop, and before she knew it, she was running 8 miles every day. Lee Domenico adopted “I run to walk” as her mantra, ignoring the past seven years of unexplained medical symptoms. She was feeling great!

Now, Lee runs a different race. Finally diagnosed with multiple sclerosis in October 2010, Lee has devoted her life to raising awareness of MS and helping others. There are at least 50 MS patients, five of whom live on Lee’s street in her small, 12,000-member farming community of Hammonton, the “blueberry capital of the world.” Lee has rallied her community to support MS Awareness Week, asking local businesses and town hall to “light the town orange.” Walk down Main Street this month and you will see orange lamps in the windows and Walk MS paper sneakers for sale.

January 2011, Lee retired from her job as a secretary for the State Superior Court of New Jersey after going on short-term disability in June 2010. Multiple sclerosis had made it impossible to continuing working. Lee was approved for Social Security Disability Insurance (SSDI) in June 2011. 

I was honored to talk with Lee Domenico as she prepares to attend the 21st annual National MS Society Public Policy Conference in Washington, D.C., March 5-7, 2012. Having won an essay competition, Lee was selected to represent the Greater Delaware Chapter of the National MS Society at the conference.

What are you most looking forward to experiencing during the conference?

“I’m very excited [to be able to attend]. I don’t know what to expect, but I’m looking forward to learning more about the different policies and how we can work together as MSers to make a difference to get public policies approved in our favor.”

Why did you decide to become an MS advocate?

“I knew I had to do something, and here I was at home [after retirement]. I had to find a way to contribute to society. Best thing I could do for everyone was to be a voice for MS.”

In addition to openly talking about MS, Lee has sent letters to the editors of the local papers in her community, and one newspaper recently featured Lee and her advocacy efforts.  

Lee will be contributing her voice on Wednesday as she visits her elected officials on Capitol Hill to discuss the important issues affecting MS patients nation-wide and to ask for lawmakers’ support in allocating vital resources.

What was your first success as an MS advocate?

Phenomenal success in raising money for Walk MS “got me motivated!” said Lee.

Like many newly-diagnosed patients, Lee signed up for Walk MS to raise money for the National MS Society with a team fundraising goal of $2000. Lee recruited a team of 56 walkers - the Lee’s MSketeers - who raised $10,000 for the 2011 Walk MS.

What did you do with that motivation after Walk MS?

“I started my own foundation, the Lee’s MSketeers Foundation. We will work with the local chapter to help people who fall through the cracks and who need financial assistance. Right now, we are waiting to receive our 501(c)(3) non-profit status.” 

The Greater Delaware Chapter will screen needy patients, and those whom the Society are unable to help will be referred to Lee’s foundation. Grants will be limited to $500 per patient year.

“I am motivated and passionate. The path I now follow is to raise awareness of MS and to educate the public of the disease. Yes, we do look good but darn it, I wish others could see our insides and how we struggle each day to function.”

What words do you have to share for those who might think that their voice doesn’t matter?

“One person can make a difference. One little voice, all the little voices, if all the little voices joined together, think of how powerful we become.”

Lee sees herself as more a team player than a leader. However, I believe Lee is blazing a unique path in supporting MS patients in her community. This may not be the road she planned to travel in life, but it is one which has spurred her creativity and passion. She is truly an inspiration.  

As the 21st annual public policy conference gets underway this afternoon, follow @MSActivist onTwitter. Use the hashtag #MSactivist to join the conversation.

Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.