Bug bites

A bug usually bites me a couple times each year, but its most recent nip was somewhat venomous. Try as I may, I can’t seem to stop scratching the mark it left.

It’s like any other bug bite: Each time the bite itches, I scratch it. Again. And again, and again, and again …

It’s close to summertime, so it’s natural to think something like a mosquito bit me. But it’s bigger than that. This bug bite has driven me to take my concerns from the local city council to the Michigan State Capitol Building in Lansing and just today to Capitol Hill in Washington, D.C.

It’s the Advocacy Bug, and it’s bitten me bad.

Inspired by our friend and National MS Society Michigan Chapter research advocate Diana Hohn, Jennifer and I encourage fellow self-help group members to be their own best advocates. We say that nobody knows your personal situations and circumstances better than you, and you need to help your cause by making your voice heard and opinions understood.

I’m doing what I can to inform my elected officials of the issues I’m passionate about and encourage them to wholeheartedly consider taking action on behalf of me, Jennifer and the 400,000 other Americans living with Multiple Sclerosis.

I got started many years ago when Cathy Zuker, leader of the Isabella County MS self-help group, introduced me to presenting to members of the local city council a resolution proclaiming May as MS Awareness Month within their jurisdiction. So we did and at one point, our group succeeded in having five local governments within Gratiot County passing such a resolution.

While such an effort wasn’t going to change the world, our elected officials saw the local faces of MS, knew such a disease was prevalent in their communities, and no longer were oblivious to our realities when conducting business for the city and county.

Then the Advocacy Bug bit a little harder, and Jennifer and I learned the value of meeting with our state legislators in Lansing at Older Michiganians Day to advocate for funding that supports the Medicaid MI Choice Waiver Program. This invaluable program provides Jennifer the assistance she needs for daily living activities while I continue to work full time at Central Michigan University.

In fact next week, we’ll participate in our fourth-ever such event and have the opportunity to meet our newly elected officials Rep. Kevin Cotter and Sen. Judy Emmons. What a rush! Check out this video to see why Jennifer and I and so many others from across the state feel the need to trek to Lansing for this annual event.

Just yesterday I scratched an advocacy itch that took my voice all the way to the nation’s capitol. And honest to God! Washington, D.C., just bit me again as I’m writing this blog! Check this out: Through the National MS Society’s Action Alert, I learned of the need to write my senators and encourage them to support those living with MS by signing onto a bipartisan Dear Colleague letter circulated by Senators Whitehouse (RI) and Johanns (NE) that urges the Appropriations Committee to direct a similar proportion of funds towards the MS research program in the Congressionally Directed Medical Research Programs (CDMRP) as compared to the past three federal funding cycles.

And so, with the technical language Action Alert provided, I added some of my personal experiences and perspectives and sent the letter to Michigan Senators Debbie Stabenow and Carl Levin. I followed up with sending emails to notify Sen. Whitehouse and Sen. Johanns that I had contacted my Senators to support their efforts.

In addition to hearing back from Ally Mendenhall in Sen. Johanns’ office earlier today, Jennifer DeAngelis in Sen. Whitehouse’s office just emailed me to share the final appropriations letter “hot off the presses!” she wrote. She continued, “As you will see, Senator Stabenow agreed to sign on – much thanks to advocates like yourself.”

Again, what a rush! And it all started with the itch to be my own best advocate and make sure my voice is heard – not only for Jennifer and me, but for the more than 400,000 Americans also living with this disease as well.

Here’s to hoping the Advocacy Bug bites you too!

 

4 Responses to Bug bites

  1. Thank you for your so important advocacy on our behalf. It probably goes a long way toward making up for the nonadvocacy of someone — me — who long ago became allergic to insect venom and consequently flees from political figures. 🙂

    On a serious note, I once spent a year in DC working for the government so I know how important constituent advocacy is. Thank you again.

  2. I am going to make a RASH decision and get more involved because it works. I have been an MS Activist for years. But with Medicare and Social Security being threatened, our voices are needed now more than ever.
    Thanks for being the great examples that you are.
    Michael

  3. Well said, too often advocacy can seem like banging your head against the wall … then again if no one speaks up no one is heard.

    Caregivingly Yours, Patrick

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